Wednesday, May 21, 2014

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 correcting this issue feel miraculous in the relief they give.

Today I took Eric to see a Pediatric Rheumatologist.  This appointment has been very hard to get and a very long time coming.  She poked and proded and asked a million questions and is sending him for genetic testing, to a cardiologist and to an ENT for an evaluation and to get his lower back X rayed....because she suspects Marfan's Syndrome, or a genetic abnormality in that cluster of connective tissue disorders.  Too early to know for sure yet, but he does have some of the physical traits...just not in a super duper pronounced way.  Learning this possibility, and adding these appointments to my calendar, and imagining the doctor bills has got me very stressed out.  I feel like I have been punched in the gut. 

Maia got her Learner's Permit on Monday, so she is going to have to go to driving school soon, and buy a car soon.  She has to hold her LP for 180 days before she can go for her road test.  I hope she can meet that goal.  It will be a help to have another driver in the family.

Bethany is still dealing with boatloads of anxiety and depression issues....as per usual.  And Ariana is also dealing with some new anxiety and depression issues.  Go figure.

On Tuesday nights our family goes to Gilda's Club, which is a cancer support group.  It is a wonderful community, and there's a group for the kids, a group for me, and a group for Wes.  Just what we need at this time.

I feel very disconnected from my parish.  It is hard to make friends.  I am lonely.  So often I am sick and tired, and I can never do any of the extra things.  Besides, often Bethany needs me to rescue her during Church.  It is a sensory overload for her, and she can only take so much.  This is very difficult.

Next school year Eric and Ariana are going to enroll in High School.  I don't know yet what grade they will be in.  I have a window between June 13 and 25 or so when I can take their records in and get them registered.  I don't know yet what grades they will be in.  Ariana is having loads of anxiety about this change in her life.  Please pray for her.  Eric is too, but he won't talk about it.  He just plays stormy music on the piano.  I am having anxiety and stress about getting their work graded and transcripts made.  Please pray for me. 

Maia plans on getting her GED, and then trying to work more and set aside some more funds, aiming to enroll in community college or UofL in 2015.  

Wes is super busy and content at work, glory to God for that.  He has nightmares about losing his ability to speak.  Please pray for him.

Me?  I am putting one foot in front of the other, but feeling very very much on edge.  This is hard.  This is SO MUCH STRESS on my plate, and there is absolutely nothing in the world I can do about it.  Dear God, please take it.  I don't want it anymore. 

Thursday, May 01, 2014

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

Saturday, April 26, 2014

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 the fridge and then process in your ice cream maker.  No, no vanilla in this one, I did not make a mistake.  The flavor comes from the slightly caramelized brown coconut sugar and the buttah. 

This recipe is NOT low fat.  ;-)

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.")