No Gabba Gabba

I've been putting off this post for awhile now as it is most difficult to write.  Last time I talked to you I was beginning Gabapentin.  When you get this prescription the print out warns that 1 in 500 people may develop suicidal thoughts on this medicine.  It turns out that 1 in 500 is me.

At first the medicine was simply making me really emotional.  But as the days passed I began to be more and more unable to control my emotions.  I was crying at the drop of a hat, which isn't like me.  Not that I don't cry at every "Dog's Purpose" ad, just that I don't usually cry during the day, all the time and for no reason.

Less than two weeks into the medicine I was having trouble sleeping and beginning to feel more and more sad.  Then one day I just couldn't take it.  I skipped lunch and just drove home from work.  When I pulled into the garage my brain said, "We could just shut the garage door and leave the car running".  I said no.

I came inside and just cried and cried.  I had planned to wrap Christmas presents for the kids but I looked at the paper and just cried and cried.  I am the queen of Christmas and I love to wrap presents, to say this was out of character would be putting it mildly.  This was so far out of character it was bizarre.

Instead of wrapping presents I laid on my bed and sobbed.  The voice in my head told me I should simply "pull all my hair out" or "stab myself in the neck."  I sobbed and sobbed.  And the thing is, nothing was wrong.  There was absolutely nothing to be sad about.  Yes, I was bummed my foot still hurt but my foot always hurts.  Definitely not worth a two hour crying jag.

Finally I perked up a bit and looked again at my bottle of Gabapentin.  I began to think maybe the medicine was making me sad.  Right on the bottle it says to call the Dr right away if you have mood changes, sadness, depression, or fear.  So I emailed my DR and said maybe I needed to get off the medicine, I was extremely depressed.

I made it through that day.  It was frightening for me and for the kids.  I just kept going even though it was so very hard.  Imagine me crying while I was trying to make mac and cheese for their dinner.  They didn't understand but I just said my medicine was making me sad.

The next day I heard back from the Dr.   His nurse called and told me to titrate off that medicine.  But she said the Dr thought that wasn't really a side effect of the meds, and that I needed counseling.  Unbelievable!  Not that there is anything wrong with counseling but it was so totally the meds!  Drs should know the side effects of this stuff.  I could have killed myself!  How many people has he prescribed that to?  I was angry.

I am off the meds now and am feeling completely back to normal.  Thank God I survived that episode, took action, and kept myself safe.  I have been referred to a pain specialist and have a new diagnosis for what's happening in my left foot.  "Complex Regional Pain Syndrome".  I'll write more about that and my new treatment later.

In the meantime, watch out for those meds!  They really can affect your brain.  Take those warnings seriously and listen to your loved ones if they are having a problem with side effects from medications.  That stuff is dangerous and Drs aren't always paying attention.

Yo Gabba Gabba!

Hey friends!  Things are progressing and I am doing well.  Monday I saw my doctor and got permission to remove my boot cast.  I also got a prescription for Gabapentin.  This is a drug commonly given for nerve pain.  Boy is it helping!  Praise Jesus I can sleep at night.  After a month of not sleeping I was becoming a real monster.

The bummer with Gabapentin is the side effects: drowsiness, dizziness, blurred vision, etc.  Basically it feels like a great big glass of wine.  This is awesome if you are staying home all day to chill.  This is less awesome if you have to go to work, write sermons, drive your car, make dinner, etc.  I have been trying to find a balance.  Yesterday I didn't take it so I could drive the kids to the Orthodontist an hour away.  The problem was, my foot was killing me with nerve pain.  By the time I did take it, it didn't really help.  So . . . that plan didn't work.

Today I am trying to stay on it so it can help the foot.  I don't feel as drunk as I did the first day I took it.  (There was an $80 unintended Walgreens shopping spree that day)  I think overtime I will adjust to it.  I am so eager to be without the nerve pain that I am willing to be drowsy.  And hey, what's wrong with being chill all day?  Hopefully things will balance out in a few weeks.

In other news, my foot is dumb.  I don't mean that as an insult I mean it as literally dumb.  Defined by Merriam Webster as silent or lacking some usual attribute.  Half of my left foot is not feeling.  Draw a line from the tip of the toes down to the heal, length wise, and the inside half of my foot feels and the outside half doesn't.  Its like walking on a foot that's asleep without the tingling.  It's not a pleasant sensation.  And it may or may not resolve over time.  I told the DR and he said, "yup".  That's what happens when you keep cutting in the same spot.

So my dumb foot and me just keep going.  We walk the dog in the morning with our stupid looking limp but both her and I are so happy to be outside we don't care.  Next week I will try playing the harp with this dumb thing.  The pedals won't feel right but we'll figure it out.

I also talked to the DR about the next MRI.  It will be late summer before we find out if this surgery worked or if my evil tumor is still in my ankle growing away.  Until then, its me and my dumb foot making our way in the world.  With the help of a Gabapentin high.  Good times.  

The Nerve

It's been awhile since I posted.  That's because I am really struggling and I don't want to talk about it.

This has been a difficult few weeks.  It is good to put weight on the foot.  I am still wearing a big boot but I am able to walk slowly without my cane.  Plus, my scar is healing very nicely and I don't have too much swelling.  So back to work full time and things look good.

But things don't feel good.  I am having nerve pain.  A lot of nerve pain.  My whole leg below the knee is super sensitive to touch.  And my pinkie toe is on fire.  It feels like I've had a giant blister and all the skin has peeled off.  Nothing is wrong with it of course, everything appears normal.  But the pain is intense.  Nothing feels good.  If I take my sock off to let it breathe after 15 minutes I can no longer stand the pain of the air on my toe.

To make matters worse the pain is always changing.  Some days I am ok during the day.  Some days, like today, I get waves of pain in all my toes.  Today it feels like someone is torturing me with electric shocks administered to my toes at random intervals.

There is no relief for this that I can find.  Tylenol and Advil don't touch it.  It's not like any normal ache or pain I have had.  It is electric pain energy.  During the day I just try to ignore it and keep going.  During the night I can't sleep at all.  I lie in bed and try to relax and accept the pain.  It's all in my head right?  But my body wants to escape the electricity so my legs just keep kicking.  Not fun.

In other news, yesterday I was supposed to be installed as Moderator of my Presbytery.  Only I wasn't supposed to be I guess, because I had to resign from that position.  It is hard watching that moment pass.  I know if it is God's will, I will have a chance again.  But still, I am sad.  I couldn't get to the Presbytery meeting, I can hardly get through my day.  And I can't commit to any committees, I can't even commit to a family summer vacation.  I don't know what's happening, when the next surgery is, or how long I will have my foot.  The next few years are totally up in the air.  So yeah, that touches a nerve too.

So, I haven't posted because I am upset.  I know I should feel happy, I have my foot right?  But I am really struggling with pain and disappointment and fear.  What if this nerve problem can't be resolved?  This is the exact brain mapping type pain that I read about when I was studying up on amputation.  I am so afraid this will never end and then we will amputate and then this will be my phantom limb pain forever.  This is so not the path I wanted to be on.

So yeah.  I just keep going.  I'm ok.  This morning my husband pointed out I always say that, "I'm ok".  I think that's because its the only thing I can say.  Not being OK is not an option right now.  If I keep telling myself I'm ok then maybe I will be.

Re-Recovery

Yesterday I got my stitches out - all 26 of them.  That's only 3 more than last year so I think that's good.  They don't use any topical anesthetic to get the stitches out and I was in a world of hurt as some were extremely tight and embedded in my skin.  Nothing like someone pulling on a stitch to make you yelp in pain!  I was not prepared for this year's stitch removal to be so much more painful than last year's.

I'll spare you the pictures but my Franken Foot makes one hell of a scary Halloween costume!

I got some good understanding of my condition talking with the DR.  He cut further down and higher up in my foot so he could see for sure the whole length of the tendon as he searched for the tumor.  He did cut the sheath open to view the whole area.  Last year's repair to keep the tendon in place did need to be cut but it was strong and he was able to reaffix it with a few stitches.

This time the tumor appears to have only grown back in the foot area and not up high in my calf which is good.

I also got a better idea about how they measure the tumor in pathology.  You cannot cut out GCT like a regular cancer tumor which they remove in one lump.  GCT is more diffuse and they cut it out piece by piece.  That's why it is so hard to get it all and it often grows back.

To send the tumor to pathlogy they squish all the pieces together to make an aggregate measurement.  So its not actual tumor size but its how much tumor you had.  Last year my aggregate measurement was 8x7 cm.  This year I am 4x3.5 so exactly half the size.  I think this is good news, as that is a good example of one year's growth.  Maybe if it does grow back we can wait longer for surgery?  I for one am not eager to do this again.

I am in a boot cast for four more weeks and adding weight bearing as I can tolerate the pain (which isn't very much today).  Then we will schedule physical therapy again (not looking forward to that).

In early December I return to the DR and we will discuss next steps and when we might do an MRI to see if the tumor is growing back.  In the meantime, more rest and recovery.

Solve the Puzzle

Our move home went smoothly and things are going well.  Its good for everyone to be back in our own space.  I'm navigating the house fairly well and trying not to push myself too hard.  There have been a few painful days that have caused me to turn to the Oxy again but overall I'm getting by on the Tylenol.

Tomorrow is my follow up appointment after surgery and I find myself having anxiety.  I'm not worried about seeing the scar or counting the stitches or even the pain of having them removed.  I've done all that before.  None of that makes me anxious.  What I am anxious about is my need to have answers.

I'm not even recovered from this surgery and I am eagerly anticipating the next step in my life with Giant Cell Tumor.  Just like before the surgery, I find my brain trying to work this out, like it is a problem I can solve.  Like a Rubix Cube I pick this puzzle up and worry it, figure it, ask questions, and try again, always seeking an answer that isn't there.

There is no solution.
There is no one who knows what happens next.
There is nothing I can do.

These truths are hard for me to accept.

In "When Things Fall Apart" Pema Chodron writes about trying to slow the habitual momentum of the mind.  Stopping our habitual state of mind and going against the grain of how we normally operate.  She imagines it like a huge wheel with colossal momentum going in a habitual direction that we must slow down and push the other way.

I am working to embrace this idea and stop my mind's habitual returning to the Rubix Cube or puzzle of my tumor and my future.  When I think of my foot, my tumor, my next appointment, etc, I am tempted to pick up the puzzle and work it for awhile, looking for a solution.  But this is not a good thing.  There is no solution and working the puzzle only causes frustration and grief.

So, I am trying to notice this urge to pick up and worry the puzzle and instead to put the puzzle down and accept.  Stop the worry wheel by accepting this moment right now.

I think about the pain I have right now, that is a centering place.  I remember that I did have a choice to make, surgery or meds, pain or fatigue and nausea, and I chose pain.  I remember that I did have power and I exercised it.  And I exercise power now by letting go of my worry.  Stopping the habitual momentum of my worry mind.

So, for today, I am accepting the pain of today.  Accepting the unknown of tomorrow.  Accepting that I do not have control of Giant Cell Tumor and neither does my Doctor.  We are both at its whim and mercy.  And we cannot plan our next move until the tumor makes its next move.  So we cannot do anything now but heal and wait.

Put the puzzle down.

Going Home

Tomorrow we are going home.  Kids and I are more than ready to be back in our house.  My parents have been super generous but everyone gets tired of long term house guests.

My mobility is going well.  Facebook reminded me that last year I was 3 weeks non weight bearing in a cast and then 4 weeks partial weight bearing in a boot.  That was a long time!

This time around I am already partial weight bearing right after surgery.  That makes things so much easier.

The doctor said I could bear weight on my foot when I could withstand the pain.  A few days ago I gave myself the green light for all sorts of funny boot walking.  "I got this!" I said, and took off with my cane.  I foolishly thought I would feel pain telling me to stop while I was in the process of testing those limits.  Boy was I wrong!  That night I was dying with pain.  Won't know I've done too much until its too late.  Soft boundaries are harder to manage then firm ones.

So going home.  I'll scoot on the main floor and crutch upstairs and do my little silly boot step as long as I can manage the pain.  I'll cook simple meals and kids will help keep the house clean enough and let the dog in and out.  I don't want to push too hard but the sooner we get back to normal the better.  For all of us.

Thanks so much for all the love and support.  Next week I am back to the doctor and will finally get a look under the mysterious black boot.  What do you think . . . more stitches then last time or less?  Last year I had 23.

The Hard Work of Recovery

Everyone is at church right now but me.  I know some Pastors love a day off church but really I prefer church.   I even go to church when I'm on vacation.  We are welcoming new members today and it breaks my heart that I can't be there.  I would much rather be at worship then spending another day on the couch.

For me, one of the greatest struggles of this process is my inability to do anything.  Days on end spent on the couch are the worst.  I read and sew and watch a little TV.  Play candy crush and surf  Facebook.  I do way too much online shopping.  Oh well.  I hate doing nothing.  On my days off I love to keep busy, grocery shopping, cleaning house, working in the yard.  Even on my Sabbath days I'm in the quilt room, baking, and making tasty dinners for the family.  Now I am literally doing nothing, every day.

Yesterday I did too much.  Got up at one point and tried to cross the room without my crutches.  My foot was OK but I strained my back.  I always forget that its not just the surgery site that is upset but the whole body gets thrown out of whack.

We also had a big blow up with the kids.  I know lots of readers know my kids and they are pretty good at school but like every kid at home they like to push the boundaries.  One in particular was in rare form last night that resulted in punishment, anger, and tears.  I am the primary disciplinarian and as it became clear that the mom-hammer needed to come down I ended up getting myself upstairs and after them before anyone realized what was happening.  Needless to say, everyone was sad and sorry and I was really sore by the end of the night last night.

That is pretty normal behavior for kids and moms.  This time of rest and recovery is really hard on everyone in the family.  And it embarrassing to have our meltdowns at my parents' house instead of the privacy of our own home.  We are all ready to move out but my Mom isn't having it.  She still wants me under her watchful eye.  And she knows I'm likely to do too much too soon.

I can't take this silly boot off and it has a big rounded front so it makes the knee scooter nearly impossible.  That means crutches only.  Which means I can't carry anything anywhere.  I could make dinner, but not bring it to the table.  Pour a cup of coffee but not carry it to a place to sit.  Make kids lunches but not get them in back packs.  Plus, truth be told, I can only stand for about 5 minutes max so all that is pie in the sky anyway.  And so, we are all stuck here.  And my parents' are super generous to take care of all of us, but really, we would all rather be at home.

And so this is the hard work of recovery.  I really really don't like it.  My mental health struggles along with my spirit.  These are dark days.  But we must keep going.  At some point this too shall pass.

Here is the view out my window this morning.  Pretty much sums up how I feel.