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 do...so 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.