Friday, April 18, 2014

Limping our Way Towards the Resurrection

Wes just got back from the doctor.  His platelet (clotting factor) levels are super low.  His chemo dose is not going to be raised next round (which starts a week from today), and his blood levels of various things are going to be more closely monitored now.  For now the chemo is controlling the tumor's growth, it seems, but there IS a doctor here in town who uses the Novocure device, so if/when  the chemo stops working, this is still an option.  Please pray for him.  He came home from last night's Church service (12 Gospel readings) almost ashen/gray and utterly exhausted.  And I'm in a fibro flare myself.  Limping our way towards the resurrection.

Wednesday, April 09, 2014

Wes' Brain Tumor Update

Wes had an MRI on Monday, and today we learned the results.  For the first time since this process started, it feels like a bit of GOOD NEWS.  His tumor is the same size it was a month ago, and the swelling is down.  Since he is fully functional still, working, getting around, etc. the doctor just wants to keep things basically the same (reducing the steroids a bit to reduce side effects) and take another MRI in two months. 

I feel like I can breathe again.  After last month, I did not know if we would have a nice Pascha celebration, or if I'd be running back and forth between home and the hospital.  His neurosurgeon is still not keen on the idea of brain surgery, at least not yet, because Wes is still fully functional in his life.  The benefits don't yet outweigh the risks. 

Chemotherapy continues five days out of every 28 days, with increasing doses every month. 

Please keep praying for us.  Pray for the kids too....they are having a lot of anxiety about all of this. 

I'm very happy right now. 

Tuesday, March 18, 2014

Gripetitude

Today's been hard, emotionally.  No big sobfests on my part, but the kids are sort of coming unglued.  Who wouldn't be, given the circumstances of their lives?  It's not like they just have a dad with brain cancer...they also have a mom who is very fatigued and chronically ill and who struggles with her own health every day.  And they have siblings who have autism to deal with, who need extra care and love and patience.  All this added together renders our family one big mess. 

I won't go into details.  Suffice it to say, more than one of us lost our temper, had a melt down, raised our voices, got super tired....it was a day.

In order to diffuse some of the negative energy I took three of the kids to the zoo for a walk.  It was colder than we wanted it to be and not all the animals were out, but at least we walked and breathed somewhat fresher air for a couple of hours.

I should not have gone because I have a hellish chest cold, but I popped a Dayquil and off we went. Now I'm UP UP UP!  Because...speed.

Naturally we came home exhausted.  Which resulted in more melt downs and more tears and more self-injury etc. etc. blah blah blah (yay, autism!)

Eventually things calmed down, and I went and picked up Wes from work and we came home and I proceeded NOT to fix supper (everyone grabbed their own thing).  I washed dishes so that Wes could tinker with the dripping faucet.  I've not been able to fix it.  He wasn't able to fix. it.  For weeks we have been turning the water off and on UNDER the sink when we need to use the kitchen sink.  This is a giant pain in the hinderquarters.  Truly, it is.  Need to call the plumber soon, then, since we both took a crack at it to no avail. 

[Paragraph deleted due to too much personal private griping and complaining.]

...and he's scared of chemo next week and how sick it will make him.  I would be too.  My heart hurts to think about his suffering.

I need more love and compassion.  And way less gripetitude. 

Saturday, March 15, 2014

Zoo Outing.

We walked along in silence, holding hands, with my fingers threaded through the straps of my purse as well.  My other hand had a cane.  People made great efforts to avoid us.  Probably because I am that strange woman in a headscarf and a cane. 

When did I become so weird?  One or the other, but not BOTH...good grief.  A cane AND a scarf...how dare I? 

We walked along, not saying much, but looking at the zoo animals as we came to each one. 

The sun was shining on us and it was warm.  Lots of families with young children were all around us.  Noticeably absent were teenagers, including ours.  The zoo is not a place that appeals to teenagers, I guess. 

But it appealed to us and so we went and bought passes.  He said something about coming here for walks after his oncologist visits some afternoons.  This would be a good place to process bad news, I knew.  That's what he meant although the words were unsaid. 

I was holding his hand and I said:  "I sure loved it when the kids were small.  I hope God gives me grandchildren someday."  He said: "I hope God gives you grandchildren, too."  Neither of us mentioned the singular that we both used. 

If we had, it would have been too sad. 

We walked along, not saying much at all until we got tired.  Then we sat and watched the sea lions.  After a bit, we proceeded to the tram stop. The tram was a long time in coming and my legs were very tired and aching.  Eventually some zoo employees offered us a ride back to the entrance in their cart.  We got to see the back side of the zoo on our ride up the hill. 

Kindness exists.  We were blessed.  And it was a fun afternoon.

This Needs to Be Said

Sooooo many people are praying for Wes.  I appreciate it and I can feel the love.  The knowledge of those prayers sustain me.  They really do. 

But what if....WHAT IF...God's answer to those prayers for healing is "No.  Not this time."  What if the ordinary course of nature is allowed to happen? 

What if Wes dies?  Will God be glorified in that way, too?  Will the Kingdom of God advance by the ordinary early death of one good man?

I truly hope, dear readers, that you are not pinning your hope on healing.  Because God is bigger than that.  God is bigger than our temporal hope. 

Lazarus died twice, you know. 

Someone told me, a few months ago, that "God is gonna heal him.  He has to.  So many people are praying for that." 

But he doesn't have to. 

The most basic, fundamental Christian prayer, the Lord's Prayer is taught to us by Christ God himself:  Thy will be done, on earth as it is in heaven." 

How can I, as a servant of God, presume to tell Him what to do?  How can I know what will be best for my salvation, or for Wes' salvation, or our children's salvation? 

Of course we ask for healing.  But we ask with open hands, lifting up our cares to the Lord and trusting in His holy will. 

That's the kind of trust and faith I want to have.  That's the kind of trust and faith I want my kids to have.  That's the kind of trust and faith that glorifies God. 

Thy will be done. 


Ever since the beginning of this cancer journey with Wes I have been at that place of agony with Christ: "Let this cup pass from me, but not my will, but Thine be done." 

So if nature takes its course, and God does not miraculously intervene, I hope that God is thereby glorified.  If God reaches down and mysteriously makes Wes' cancer go away, I hope that God is thereby glorified.  If I have to become a young widow and finish raising my kids alone, if I have to step into a very very frightening future of potential poverty and loneliness, I hope that God is thereby glorified.  Or if Wes is given a few more years....whatever happens....I hope that God is thereby glorified. 

We aren't out to manipulate God.  We aren't trying to tell God what to do. 

But please, don't stop praying for us. 

May God be glorified, in ALL THINGS.  (even in death...because...."Christ is Risen from the dead, trampling down death by death and upon those in the tomb bestowing life.")

Monday, March 10, 2014

Long Awaited Update on Wes

The reason I have not been updating you all on Wes and his brain tumor is that there has been no new information.  He's been going to work, he's been taking his prescribed meds, life goes on. 

Last week he had a follow up MRI to see how the chemo and radiation course affected his tumor.  Today we got the results: 

Not good.  The tumor looks worse, is more swollen and has taken up even more contrast dye than on the last MRI, which is an indicator, the doctor says, of how aggressive it is. 

For right now, Wes' day to day functionality is good.  He's started having a headache when he leans over, and for the past few days he's been running a low grade fever which his oncologist has been made aware of.  So far his blood work is still coming back with numbers within the normal range, but they ARE starting to slip down towards the low end of the normal range.

He will have another MRI in four weeks and then we shall see.  The doctor DID bring up the possibility of brain surgery, which we are glad for.  Right now Wes has not yet lost his speech, so it is highly risky to do surgery, given the location of his tumor, so if it is a necessity, he will likely have to be awake for it.  Oh, the horror. 

So we got the bad news.  I am deeply sad from this, but not surprised at all.  I think God has been preparing my heart...as I have felt all along throughout this cancer journey. 

Please keep praying for us.  Pray for Wes and me, but also please pray for the kids.  They are showing signs of stress, sadness and depression.

 Lord have mercy. 

Friday, January 24, 2014

Quickie Wes CancerUpdate

Just a super quick update: 

Wes is just three radiation treatments away from being DONE with radiation.  We will both be GLAD.  The side of his head is rather burned.  This afternoon he meets with his chemo oncologist to find out about the new chemo regimen/dosages that he will be on after radiation is over.  He is also, at last, being weaned off his steroid. 

Getting off radiation and the daily chemo is definitely the end of "phase one", so to say.  It feels like a milestone, but it is one with a big tinge of dread attached to it.  As far as standard treatment goes, this is IT.  Unless Wes can find a neurosurgeon that does NOT think his tumor is inoperable, it will just be monitoring the tumor from now on for re-growth.

I'll be glad to see the radiation burns diminishing.  I hope his hair and beard can grow back.  But it may not, with the larger weekly chemo dose he'll be on. 

I can tell he gets worn out more than he used to.  He lacks energy reserves, but can still go to work each day. 

I'm learning to pay super close attention to my own physical needs and health.  We continue to pray for healing, while at the same time praying "Thy will be done." 

Sunday, January 19, 2014

And it is Good.

Today I was contemplating life with chronic illness.  Of course, for me life with chronic illness has become normal.  I am used to it.  My life with chronic illness is just MY life.  It is the way it is.  I was thinking of how there are so many things that I have to be grateful for, such as the love of friends and family, a warm home, plenty of food, the ability to go worship God at Church in the Divine Liturgy.  I have the Eucharist with which and for which to give thanks.   I am surrounded by such a loving and great "cloud of witnesses".  I have prayer. 

There is the grass under my feet.  There is the air, and the free animals that roam around and grace me with their visits, like Mr. Cardinal that loves to perch on the driver's side rear view mirror of my van when it is parked in the driveway, and Mrs. Cardinal who is often nearby.  The chipmunk who lives under the rock in our front yard, and all the squirrels.  There are occasional visits from rather well-fed raptors in the neighborhood, too.  (... and I wonder that I have not seen the chipmunk in a while.) 

There is the garden in the spring, summer and fall.  There are the lights in the neighborhood that our various neighbors put up in December, which I get to enjoy. It does not matter that I will never put up lights of my own, because lights are there, and I can see and enjoy them. 

There is the goodwill of so many people, who offer a smile in return for a smile when I am out and about doing chores and errands.

There is the cozy intimacy of friendship forged in the crucible of chronic illness and similar suffering. 

Everywhere I look, I see love.  How is my cup not full?  My cup is full. 

And I was thinking that one big temptation that befalls those of us who are called to a life with chronic illness is self pity.  This can easily degrade into bitterness.  "I'm not able to work" "I can't have nice things" "Even Church retreats are painful and a chore for me" "I don't get to enjoy things" "I can't go hiking anymore".  Thoughts such as these plague us.  Partly because they are true, but there is an undertone of falsehood there, too, which we best deliberately set aside and fight against. 

Remember, this chronic illness gig is a marathon, not a sprint. 

And when we think about God's great salvation, what are a few temporal aches and pains?  An offering, perhaps.  An oppoprtunity to unite ourselves with the One Who Suffered. 

Complaining in my soul about the bitterness of life with chronic illness is like a child who eyeballs her brother's piece of pie, and who is angry because his, it seems, is bigger.  (The reality is, the pieces are the same).  And even the his pie is bigger, so what?  It's still all you need. 

My life is all I need.  And my chronic illness is a gift.  I have seen it written that chronic illness is a form of asceticism.  If this is true, then God has GIFTED me with a form of asceticism because I asked to be close to Him and he knows how ruled by my passions I am.  And so I am given another struggle, and it is good. And I can look at my life in this way.

And it is good.