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Showing posts from 2014

Saint on the Paint

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Nativity Fast is coming up, starting on Saturday (for those of us on the New Calendar).  Now that my children are almost grown, or grown, and far too old for things like this, my head is full of ideas of things that would be so much fun for a mama with younger children to do with them at this time of year. 

I also made Jesse Tree ornaments when my kids were way too old, so I missed the Jesse Tree boat as well. 

But, if keeping up with the Nativity Fast and doing Jesse Tree with your kids every day from now until Christmas doesn't add enough holiday cheer (insanity) to your already busy life, let me give you one more idea: 

Saint on the Paint.

It's a rip off of "Elf on the Shelf" which is a rip off of Advent.  Saint on the Paint at least brings things back in line with where they need to be. 

And what kid doesn't like a good hide and seek game? 

They all do.  Heck, I still do, and I'm about to turn 45! 

So, here's my wee idea:  take a small icon of St. Nic…

10 Things Chronically Sick Families Need

With Wes having cancer and me having The Multiplicity of Chronic Illnesses (fibromyalgia, chronic fatigue and auto-immune low thyroid, along with a bad back) we are really really feeling the crunch of not having enough energy to go around or get it all done. (Not to mention Bethany's autism issues, Eric's leg pain...etc.)  We are all drained.  And it's pretty obvious that we don't have enough energy to do everything.  Some things have been falling by the wayside, such as Maia's driving lessons (soon to be remedied by way of Kentucky Driving School), or putting a new light bulb in the front headlight of our car.  Some things we just have to say "no" to because we don't have the energy to do them, such as parish banquets, or scouting.  And some things we just have to do even when we feel like crap, like cleaning the house.  Sort of.  Yes, it is possible to vacuum while sitting down.  It helps to have a chair with roller wheels.

So, I was thinking about …

A Year In

In a couple of days, we will officially be one year in to our cancer journey.  September 30th, 2013 was when Wes had his seizure that we thought was a stroke.  We went to the ER and they found a lesion on his brain.  For three days he was in the hospital with a team of doctors trying to figure out why a young healthy man such as Wes would have a stroke.  Only one doctor said "that's a brain tumor"...which of course was confirmed a month later on a follow up MRI...and then in November we got the official diagnosis after the biopsy...but I count September 30 as the beginning of our Cancer Journey.

And Wes is a walking miracle.  He has the most aggressive type of brain cancer there is (Glioblastoma) for which there is no remission and no cure...and so far he is still able to drive, program, work, talk, ...all that normal stuff.  He is himself...with side effects from the chemo.  This is the cancer that has a 14 month median survival rate WITH TREATMENT.

So...all that to say…

The Other Side of the Tapestry

Today during Divine Liturgy, I was thinking of my oldest daughter visiting Holy Dormitian Monastery this weekend, and how she wants to be a nun, but how she also struggles with mental health issues and autism. I was remembering when she was 13 and was hospitalized catatonic and out of touch with reality. I then thought of my own journey with ill health that I just can't seem to fix. And then I thought of my husband with deadly life shortening never-goes-into-remission brain cancer, and my son with chronic leg pain...and I asked "WHY Lord? the load is too heavy! Why so much on me, on us?" and the answer came with this thought: look how tender-hearted it has made you. Look at how much you lean on me. Look how much this has humbled you. Remember that arrogant young woman you used to be, so full of pride? Remember how jaded you were after you graduated from Seminary? Remember how you told me you wanted to become holy? And now look at you broken, so…

A Slice of Life

I am determined to start blogging again. About the ordinary things, about life, and also about Wes' cancer journey, and my journey with him.

It's hard.  I'll start with the cancer stuff.  He's doing pretty well.  He just had his seventh monthly chemo treatment (usually the protocol stops at six of those) and since then, he seems to have developed a new allergy.  He already developed an allergy to ivory soap, and now there is a food he is reacting to...hives, itching, rash.  It's either apples (his lifelong favorites) or coffee.  Neither will be easy for him to eliminate.  Obviously his system has reached an end, or at least a new level of not-loving-chemo.  He's done so well for so long.  We have much to be grateful for.

It is difficult to know what the tumor is doing with the MRIs only every three months.  Just a couple more weeks, and we'll have another one, and then we will get a snapshot of where we are at currently.  He's more tired than ever, and …

Family Update

Wes is doing fine.  He's working, etc.  June 4 he will have another MRI and on June 6 we will find out the results.  I'm nervous.  That's our wedding anniversary.   Setting aside the idea of the possibility that bad news will ruin our anniversary celebration.

Week before last (or was it just last week?  I forget), I saw a neurologist.  We are trying to figure out why my legs get so weak and wobbly and shaking.  So she is sending me for an MRI (tomorrow) and to see and neuromuscular specialist who will do further testing (something about an enzyme biopsy, I think).

Last Friday I also had an appointment with a Physical Therapist to find some exercises I could do to relieve my shoulder pain.  I also mentioned my leg issues to her.  She did a work up on me, and come to find out, my pelvis is twisted!  The left side of it, is tilted forward an in.  So. Not. Good.  This might explain my weird left leg issues and much of my back pain as well.  The exercises she gave me to start c…

No more putting off the dreams....

Wes accepted my invitation to go to the Jane Austen Regency Ball (and festival) in July...in full Regency costume of course. I'm a very experienced seamstress, so I have the mad skills...I think I will need a day dress and an evening gown. He will need a linen shirt, breeches, waistcoat and a coat...I'm going to be one very busy lady unless I can find a place to rent him a decent costume!!!! (I've wanted to go for years but it was always put off as "someday"...today I realized that we are out of time, and "someday" has to be this year. 

Jane Austen Festival, Louisville

Casein Free Dulce De (coconut) Leche Ice Cream.

3/4 cup clarified butter (Ok, I will admit it, I used regular butter this time...but to make the recipe casein free, lets use clarified butter, shall we?)
1 lb. bag of coconut crystals

Melt the butter and sugar together until brown and bubbly.  don't boil it.  You aren't making candy. 

Add:  2 cans of Trader Joe's coconut CREAM and 3 cans of Trader Joe's coconut MILK. 

Stir all this in.  whisk whisk whisk!

Whisk in 4 farm fresh pastured egg yolks.  Don't even DREAM of adding eggs that aren't fresh from the farmer and from healthy pastured chickens.  Just skip them instead.  Do whatever you want with the egg whites, just don't eat them raw and don't make one of those horrid 1980's style low fat egg white omelets with them.  You only live once and life is too short for hideous egg white omelets.  I recommend meringues. 

2 Tablespoons of vegetable glycerine (this will help your ice cream to not freeze solid, so that it is scoopable). 

Chill this in…

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.

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&…

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.…

Zoo Outing.

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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 w…

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 tel…

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…

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 stil…

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 …

Looking Towards Lent

Today Wes came home from radiation treatment and told me he only has 8 treatments left!  Next time he goes in, they will recalibrate, and focus the beam on a smaller area on his head. 

After the radiation is over it is over, and he will not be eligible for this type of treatment anymore.  His chemo dose will change to maintenance, and then the scary part happens. 

I feel like this part of it...these early days, with him not having side effects from the chemo...have been our reprieve. 

It is easy to pretend, almost, that things are normal. 

On March 5 he is scheduled for his MRI and about a week later we will meet with the neurosurgeon to hear the results:  What did the treatment do so far.  After that, it's monitoring his condition every three months or so, and continuing to take maintenance chemo. 

His tumor is in an inoperable spot.  If it grows into a more accessible area, they will at least be able to get to that. 

Of course the MRI might just show that he's been hea…

A Rose by any Other Name...

Another week has gone by, and Wes is withstanding his radiation and chemo in remarkable ways.  He feels fine.  He has tons of energy.  He's working.  He's doing chores around the home.  He is cheerful (except when he thinks about possibly not being around to take care of his family...then he gets teary eyed). 

I am praying that the chemo and radiation, but most of all prayer, makes it all go away (which would be a miracle).  I am praying for healing or for many years of remission. 

Because physically I am not doing well at all.  The debilitating fatigue and pain I deal with is worse than ever.  I take my vitamins, my meds, get sleep, eat healthy food, exercise when I can....nothing helps.  It just is. 

I've been reading about Chronic Fatigue Syndrome lately.  I was under the (apparently mistaken) impression that Fibromyalgia and CFS are two manifestations of the same illness (this being the medical opinion expressed by Dr. Paul St. Amand in "What Your Doctor May No…