Wednesday, November 12, 2014

Saint on the Paint

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. Nicholas, and hang him in a different place each day. 

Each location will have something to do with some sort of alms-giving or learning opportunity.
.  It might be an act of service your child can perform to help another person, perhaps, or something they can collect for the poor.  Or even just some hidden coins near where the saint is hiding so that the child can help fill the alms box at Church, or pay to light a candle.  So, to get you started alms-giving with your child this Nativity Fast, here are ten ideas: 

1.  Hide your saint near the coloring supplies, and spend some time making cards for the shut-ins or sick in your parish.

2.  Hide your saint in the pantry.  Donate something to the food pantry together.

3.  Hide your saint where the fancy dishes are kept.  Offer the gift of hospitality to someone and invite them for dinner.

4.  Hide your saint near the coats or shoes, and then go out and rake someone's leaves. 

6.  Hide your saint in the bathroom and learn about water scarcity in developing countries together. 

7.  Hide your saint in the closet, and donate a coat to the homeless shelter.

8.  Hide your saint near school supplies and then put together some IOCC school kits and send them off.

9.  Hide your saint in the bathroom, and then put together personal items kits (toothbrush, soap, washcloth) for Syrian refugees, via IOCC. 

10.  Hide your saint near the television and watch a movie about a saint or Bible story together. 

OK, hope you have fun.  I'd love to hear if anyone decides to do this. 

Sunday, November 09, 2014

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 this.  About us.  About what the real truth is that ought to be said when people ask us how we are and I say "fine!  Wes is still working, glory to God!"  While that is true, the other side of the coin is that he's working but he comes home very tired, and that is all he has energy for.  And he was the person who used to make up for MY slack because of MY illness.  Just because Wes has cancer doesn't mean I suddenly DON'T have all my health problems...because I still do.  I am working as hard as I can to be as productive as possible, but there are limits.  We aren't just a family with a sick parent, we are a family with TWO sick parents:  A sick family. (because the kids aren't all that well, either, for all our efforts of making healthy choices notwithstanding.

So here is what sick families need:

1.  Sick families need help sometimes...maybe offer to come on a Saturday to do some chores for them: Yard work, garage clean up, our house cleaning. Things where they can sit and direct traffic and someone with energy can do the things that require energy. Because they are sick.  And tired. 

 2. Visitors. It gets lonely being sick and not having enough energy to go and do fun things. Sometimes sick persons or families don't even have energy to stay for coffee hour or fellowship after Church. If you have a chronically sick person or family in your parish, call them and see if you can come by for a visit. Visiting the sick is a corporeal act of mercy, long encouraged in the Christian Tradition. If you bring a cake, there might just be wonderful tea and fellowship. 

 3. Meals sometimes. Just because they are tired. All the time. Call up and offer this. Don't ask "Do you need anything?" because that is an overwhelming question. Just pick something and offer to do it. Your sick brother or sister in Christ will feel loved. 

 4. Meals during emergency times, like when someone is in the hospital, for sure. This is a ministry many parishes excel in.  Keep doing it, because it is very needed. Even if the family has competent teenagers, consider that they are also feeling the shock, stress, and overwhelmedness of having one parent in the hospital, and the other parent at the hospital for many hours each day.

5. Extra hugs and being understanding if the tears flow. 

6. To be kidnapped for a night at a coffee shop or a wine bar for a "girls night out" or "men's night out" ....especially if you can do the driving if your friend is often sick and very tired in the evening. Just because someone is sick doesn't mean they aren't still wanting contact.

7. The kids might still like to get together with their friends.  But their parents are sick and tired and don't have the energy to make it happen.  Invite the kids over to hang out with your kids (their friends) for game night, movie night or a sleepover or a fun outing like bowling or mini-golf.  Offer to do the driving.  \

8.  A listening ear.  Seek them out. Let them unburden and tell how it is, whether this happens at coffee hour, or you give a call or send a text...  It might be hard to hear, but it's much harder to live it.  God will give you the grace you need to love a person in this way. Be beside them in their grief.  

 9. Understanding: If your friend is not as involved in parish life as you are, please know that it is not due to lack of love for God and God's people or the community, but is truly due to illness preventing attendance and participation.  Pray for them, and know that they pray for you.  

10.  Prayer.  This might be the hardest thing AND the easiest thing all at once.  It helps a great deal traveling through cancer or chronic illness to know that we are being prayed for. 

Who are the sick families or people in YOUR parish? 

Sunday, September 28, 2014

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:  Wes is a walking miracle man, and he's doing so well, thank God.  The future is in God's hands, however long He decides to give him.

Me, on the other hand:  I am a wreck.  What if Wes lives for another ten years?  That would be a wondrous and fantastic miracle indeed, but I cannot live with this level of stress for another ten years.  I have been in crisis mode for a year and it is WRECKING ME.  And I don't know how to settle in for a longer journey.  I have gained 30 pounds, I am weak, I am wobbly, I have very little energy, I cry all the time, I am scared and I am grieving.  And from my perspective, this journey SUCKS.   I'm glad Wes is doing OK (he has much less energy than he used to, is tired a lot and struggles in that way, so it means many times nobody in the family has any "get up and go" oomph...dont' get me wrong...things ARE different, even though he is still alive, talking and working.)  But I am a wreck.

I need to figure out how to settle in for the long haul, and not just for a short "oh no he's gonna die in a year" crisis cancer journey.  And quite frankly, I don't know where to start with taking care of myself.   Everything costs money that we don't have in our budget, thanks to that lady that totaled my van last year and the new to our budget car payment that resulted. One big result is that we are now a one car family, and that we gave up our YMCA membership where I was going to the pool.  

I feel like I need to find a balance and I am so off kilter I don't know where to start.

In a perfect world, I could get a professional massage a couple of times a month.
In a perfect world, I would be able to get back into the pool at the YMCA and swim or do movement in the water that would not hurt my hip.
In a perfect world I would be able to find someone to help me figure out how to balance exercise (and what type) to get stronger with fibromyalgia pain so that I don't keep spiraling downward and getting weaker and weaker. (last winter I ended up in the ER from post-exercise fibro pain when I tried to take up lifting weights again starting w/ 1 pound, it's a THING that I just can't push through.)
In a perfect world, I would be getting better pain management help than I do.
In a perfect world, I would tighten down on my eating and give up the sugar again but...SPOONS...dieting takes energy and I have been SOOOOO overwhelmed just the thought of dieting makes me want to cry.  I try for a week here and there...and then fail fail fail.
In a perfect world I would be doing the exercises to help my hip.

In real life, I am drowning.  glurblegrrrblegurble.

Sunday, August 31, 2014

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 tender and fervent and the opposite of jaded.....the cross is the way." Today I caught a glimpse of the "other side of the tapestry of life."

Saturday, August 30, 2014

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 is sad and depressed, unmotivated.  The grass in front of our house is getting quite tall.  I keep thinking I can get to it, but I have not done it yet, either.

I still struggle with low energy.  I guess I always will.  I get up and go and do and then hit that wall.  I have so many ideas and projects that I want to do and implement, but I run out of energy and am utterly spent.  I'm doing better than I have in the past, but not as well as I want to be doing or need to be doing.  I need to exercise more, but it doesn't ADD to my energy it's hard to be motivated to do it, even thought I am very unfit and it would benefit me least in theory.

My two younger kids are enrolled in High School now.  They are both juniors.  Our Homeschooling days are over.  Dare I say "at last"?  AT LAST!!!!!  I was not loving it the past couple of years.  I could kiss all their teachers for taking that burden off of my shoulders.  My two older daughters both got their GEDs this past summer.  Maia is working and learning to drive.  Feels like another item on my to do list.  She bought herself a car with her own money.  This mama is proud.

B is at Dormitian monastery this weekend.  She rode up with a friend from Church.  I hope their time is blessed.  It is her first visit to a monastery.

So, that's the macro overview.

Today was fairly ordinary.  Got up, coffee, breakfast, know the drill.  Wes and I went to the Farmer's Market to pick up our weekly milk and egg order from our farmer.  While we were there we sat down on a bench together and listened to two guys playing gospel music.  I wish we could have heard more than two songs, but it was almost noon when we got there...time to pack up.

Fortunately for us, our car ran quite well there and back again today.  Last week, the gas pedal stopped working and I coasted, going slower and slower and slower for about TWO MILES, across the Sherman Minton bridge (uphill until the top of the bridge and then we started picking up speed again).  Last week I'd estimated the distance to be half a mile, perhaps three quarters...but no, today we measured it, and it was two miles!!!!  So last week we did the tow truck, walk to farmer's market and rent a car for two days rigamarole, and it turned out to be the car's COMPUTER needing an upgrade, of all things!!!!!  Thank God it was still under warranty!  I'm glad there were no "adventures" going to the farmer THIS week.

And then this afternoon I decided to clean and reorganize my work space in my room.  We moved some furniture (just a little bit) and I cleaned and cleaned and cleaned and cleaned some more.  Several bags to go to the thrift store and at least one very full bag of trash.  It looks great in that corner now, almost (still have a bit more to do maybe tomorrow or Monday) and I hope it will make it easier for me to work on my little sewing projects and etsy shop orders.

I wish I had more energy.  Life with no energy feels lonely sometimes....often I am on the sidelines, peeking in to other people's fun lives via facebook or blogs or whatnot...and I'm just sitting here exhausted, and my husband is sitting there, exhausted, and it seems like we never DO anything...except go to the doctor and pay medical bills.

And so that, dear friends, is a slice of my life.  I sure hope I can make it to Church tomorrow and not be in too much pain or fatigue to hold myself upright on a pew.  (Yes that happens.  Sometimes even sitting is too hard).  Geeez I sound depressed.  Sorry. 

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 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 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" 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


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 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 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 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.  

Wednesday, January 15, 2014

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 healed. 

We don't know.  We don't know anything yet. 

Just grateful he's feeling OK for now, and that he's able to drive again. 

That's the update.  These are early days yet.

God is our only true hope, because all any of these treatments are doing is buying him a wee little bit more time.  When I stop to think about it, I am incredibly afraid and sad. But somehow I'm also numb and I can't seem to cry much anymore, even though I think it would do me a world of good. 

March 5 is the first week of lent.  Our Lenten journey will be defined by that MRI and what it tells us. 

Lord have mercy on me a sinner. 

Saturday, January 04, 2014

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 Not Tell You about Fibromyalgia", the author of the guaifenesin protocol that my diagnosing doctor put me on.  All this time I've been like  "of course I have CFS, that's the same as fibro and for me the fatigue is worse than the pain"....but now I'm talking with other sufferers and reading articles and it seems the mainstream medical opinion is that they are two different things.  So now I'm wondering if I should get a new diagnosis, or what?  Would it matter?  My LIFE would not be any different?  I would still live under that cloud of crushing fatigue, paying for normal activities with days of feeling sick, fatigue, pain and recovery time, having to carefully manage every morsel of energy, exercise intolerance, etc..  What would change, really?  A rose by any other name...

I hate being chronically ill.  It's all in my own thoughts, but I feel judged.  I wonder all the time if people think I'm faking it, if they think I'm lazy.  Why do I care what people think?  Nobody ever says anything to me, so it is really just all in my head.  Lord have mercy. 

So, I'm wondering about all of that.  I'm feeling pretty darned sick right now.  It's been more than 90 days since Wes had his ONE seizure episode, and he's on Kepra and he's feeling better than I he is driving again. 

I heard about someone with Glioblastoma who did the chemo/radiation thing and went into remission for FOUR YEARS!!!!!  I'm praying for a similar miracle for Wes, if not total healing. 

God be glorified in all things, no matter what.  I'm trying to teach myself to live in the present moment, and not freak out about the future.  Because I don't know what the future will hold.  And right now, I NEED MY HUSBAND, and I have him.    So, glory to God for that mercy.