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 dumbells...so, 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 levels...so it's hard to be motivated to do it, even thought I am very unfit and it would benefit me greatly...at 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, prayers...you 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 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.