Tuesday, November 25, 2014

Life on the other side

I have been quiet lately, Gentle Reader, not because I have nothing to say, but because I have so much to say that I have been at a loss how to say it succinctly and meaningfully.  I am not sure I can do so now, but let me make a start by sharing one thing that has changed my life significantly.

The week before my cataract surgery, I saw my oncologist and received my remicade infusion. I had an honest conversation with my doc about managing the side effects of the post-breast cancer hormone therapy drug I have been on for about three years now. I had been on one of the aromatase inhibitors for that time, and prior to that, had been on the similar drug tamoxifen for about 3.5 years after my first breast cancer.  I knew I didn't feel well on those drugs, but the side effects were accumulating, so we crunched my risk numbers again, and weighed the options, and decided I could safely discontinue that drug.

As I said, I knew I was not feeling well for the last 6.5 years on those drugs.  But I had no idea how dark the place I have been living really was.  The first day off the drug I slept through the night for the first time in 6.5 years.  I woke looking forward to the day for the first time in 6.5 years. And despite the infusion and the surgery, I have a renewed sense of energy and hopefulness that has been totally absent from me.  I really had no idea how tough that medication was on my body until I came off it and saw the difference.  No words that I have tried to use to describe this does it justice.  It has been a huge surprise, a revelation, a rebirth of sorts.

I have heard people who have dealt with serious depression say that in the midst of it their pit is so deep and dark that they have no thought of ever being able to climb out of it.  That is how life has been on hormone therapy for me.  I knew I was not depressed in the sense of losing my grounding or my hope or my comfort or despairing.  I just felt so terrible all the time that realistically my outlook was bleak.  But there is new wind under my wings, and a new hope-- not just in the eternal and the spiritual, but in the here-and-now incarnated world-- just when I had given up on ever sensing it again this side of heaven. Every day has been such a battle.  I have felt like every step was made walking through wet cement. But now everything is different.  I have made it through something very hard and long.  But I am currently on the other side. Amazing.

Add to the end of the hormone therapy that my autoimmune disease is under control and in remission, and I truly feel like I've been given my life back.  Wait until I can get glasses that work, and can actually see again.  Life will be totally amazing!

God is so good.  And I am so thankful.

Thursday, November 13, 2014

Quick eye update: The pirate is gone

This picture is an accurate portrayal of how I felt yesterday.  I dumped both water and tea all over the counter at my mom's house before I realized I am not very savvy without my binocular vision, and asked other people to do the pouring!  It gives me great respect for friends who have learned to compensate for that problem.

Today the patch was removed, and I am back to using both eyes.  Everything looks good so far.  I am on large doses of prednisone, plus steroid and antibiotic eye drops, and am now experiencing some vision weirdness of a new sort.  My newly-lensed eye, despite being pretty red and getting a spectacular bruise beneath it from the shot that immobilized my eye during the surgery, is seeing great! (photographic evidence can be seen here)  It is perfect for the computer without glasses, and I can read road signs without glasses.  After not being able to read out of that eye for about a year, that is fabulous, and makes me giggle with delight, and praise God from whom all blessings flow.  The other eye, however, is its same horrible self, so the difference between the two eyes is enough to give me headaches, and I will have to learn to compensate for 4-6 weeks until I am ready to get new glasses.  We'll have to see what I can do about that.

I will return to the doc in ABQ early Monday morning for a recheck, but so far, so good.  I am so grateful for your prayers, Gentle Reader!  And so grateful to God for His hand of mercy in my life.

And now for a few days to rest these eyes a lot, and to figure out how to sleep on prednisone, and while wearing an eye shield, and how to get all the adhesive off my sore face.  :-)

Tuesday, November 04, 2014

The rhythm of life

I have been contemplating the rhythm of my life for the last few days. It looks something like this: a flurry of activity to prepare for an infusion so that I can do nothing for a day or two afterwards, then a few quiet days that lead to a gradual build-up to a "normal" activity level, and then back to the flurry of activity before the next infusion.  I have an 8-week cycle going that is becoming a routine.

Except that nothing is ever routine.  My last day of "flurry" this morning started with a migraine.  If it had just waited another 24 hours, I would have been sleeping anyway. But today I have places to go and things to do. What a bother.

My plans get interrupted and over-ridden enough that it really should cease to be a surprise.  If truth be told, I think my idea of a "normal schedule" is just as illusive as the idea of "normal weather": I have some composite sense of the general  pattern, but the current time never follows the pattern in my mind, and I begin to wonder if the idea of "normal" is only some phantom figment of my imagination with no existence in ontological reality.

But before I stray too deeply into metaphysics, let me just say that I am glad for whatever pattern I can get my hands on. I am grateful for this 8-week cycle and the healing it has brought me, and the sights I continue to see with these eyes of mine.  May I see my Maker in this rhythm of life-- and may you see his mark in your pattern of days, too, Gentle Reader.

Monday, November 03, 2014

Health Update

Friday I returned to my ophthalmologist and wanted to update all your faithful prayer warriors.  God has been busy bringing healing and answering your prayers!

My eyes are better than they have ever been.  Everything is quiet and no evidence of disease.  That means I will go ahead with my next remicade infusion on Wednesday (11-5) and then, Lord willing, will have surgery to remove my right cataract the following Wednesday (11-12).  Most birdshot patients never reach this place of blessed control of disease, and I am very grateful for God's mercy to me.  I am teaching, travelling, running my home, serving others, and seeing everything as I go.  What mercy and grace!

Because of the ravages of the disease and the on-going immune-suppressant treatment, I am at higher risk for complications from this surgery-- both increased risk of infection and increased risk of structure damage and scarring in the eye.  So I would ask you, Gentle Readers, to ask for even more mercy from the Great Physician on my behalf.  He is always faithful.

After surgery, I will hopefully continue this treatment regimen for about another year or so, and then see if I can transition off of some of these drugs and stay in remission.  But for now, we will keep things steady state.

Thank you for your prayers and encouragement, Gentle Readers.  Those prayers lift me on those mornings I have a hard time facing the day, and in those nights when I struggle with fear and doubt.  I suspect the greatest work being done by God in me is not in my eyes.  May our heavenly Father be gracious to do a good work in you, too, Gentle Reader.

Sunday, November 02, 2014

Sabbath Songs

My very early morning listening this morning:

we were pressed on every side
full of fear and troubled thoughts
for good reason we carried heavy hearts 
it is good to come together
in our friendship to remember
all the reasons hope is in our hearts 
hallelujah hallelujah
Christ our joy and strength
hallelujah hallelujah
Christ our joy and strength 
now with patience in our suffering
perseverance in our prayers
with good reason this hope is in our hearts 
hallelujah hallelujah
Christ our joy and strength
hallelujah hallelujah
Christ our joy and strength 
oh we saw the face of Angels
many good things well secured
for good reason this joy is in our hearts 
hallelujah hallelujah
Christ our joy and strength
hallelujah hallelujah
Christ our joy and strength
hallelujah hallelujah
Christ our joy and strength
hallelujah hallelujah
Christ our joy and strength 
for good reason joy is in our hearts