Am I normal?

I have been asking myself this question a lot during the past weeks.  It was this time last year, March to be exact that Steve’s GBM returned.  I suppose this is why this questioning of mine began brewing.

I find myself continually going back to this time last year.  Every week that passes my mind is more preoccupied on reliving those days, weeks, months, why?   Is this a part of this grieving process that everyone goes through?  Is this strange that I am wanting, needing, driven to recall and look in hindsight at all that we went through?

What am I hoping to discover?  What need could possibly be filled by me rehashing that emotional, draining, nightmare?  But here I am searching and questioning how I got through this time and trying to look back and get a feel for what Steve must have been going through.  Self destructive?  Maybe, but this longing seems to be driving me, so I’m putting it down in words, maybe this too is part of my process.

Most of you who know me well know that I start my days with a quiet time.  This began in October 2008, a month before Steve’s diagnosis...but that’s a whole other amazing story.

My quiet time begins with my favorite devotional book (I’ve tried many, but keep going back to this one), “Jesus Calling” by Sarah Young.  It daily seems to speak to my heart.  She includes scripture readings after each entry.  I find the verse that is most meaningful to me at that time and then I journal about it, and anything that seems to be on my mind.  After all this time, I believe I have completed about 20 journals, which has filled some hunger within me. I think this was the first step that caused me to write the Caring Bridge entries, and now this blog.

My Journals

My daily journaling is very different from what I write here.  I journal about my concerns for the day, what I need to do to keep myself focused, prayer request for others and simply whatever comes to mind.

I tell you all of this because this is where I seem to be drawn now.  Going back to the journal that I wrote a year ago to understand where I was then and where I am now and I suppose I hope to find where I might be headed in the future.

I remember that I was writing in a red journal when Steve died.  I began my search there.  Opening the journal the beginning date was April 14th.  As I read through the days, I was taken back to that time a year ago.  Reading my words, the fear we were going through had grown dimmer in my memory.  It was just this time a year ago when I noticed that Steve was sliding downhill quickly and fear overwhelmed me.  I journaled of his trouble with word finding, unable to keep a constant thought, more and more confusion, balance problems.  

I wrote that I was worried about bringing up my observations to Dr. Fichtel in front of Steve because I didn’t want him to realize how much he had declined.  I did talk to Dr. Fichtel about it on that April visit, but it was only after she had told him to keep taking the Temador and come back in another month for a CT.  I remember, after reading that entry, that it was my words of concern about Steve that caused her to order another CT for the next day.  That was the CT that showed the tumor had doubled in less than a month.  Steve went on Avastin that day.

I write this not to sound heroic, but to give advice to those of you who might have a loved one you are concerned about.  I knew Steve better than any one, and though difficult, I knew I had to be his biggest advocate.  I had to override Steve’s medical knowledge and go with my gut and step up and voice my greatest fears, had I not, that CT, nor the CT he had five years prior would have ever taken place.  BE AN ADVOCATE.

I wrote of my fears, fear that Steve would be bedridden...something he spoke often of never wanting to happen.  I wrote of my fear of how could and would I handle Steve’s health issues, knowing now that everything we were going through in April would surely magnify.

I wrote of Steve’s words.  He would tell me he knew he only had a little time left.  He would give me instructions for the future and what I didn’t know is even in those days, Steve was continuing to take actions that would make life easier for all of us once he was gone.  Steve spoke of his increasing weakness, fatigue, his abilities dwindling, but he would say these things to me in a matter-of-fact way, preparing me for what he knew was near. I wrote of Steve withdrawing, talking less and sleeping or simply just silently sitting more and more.

I wrote repeatedly, day after day, begging God to be merciful to Steve and take him quickly once he got to the point his life was not worth living.  Those words were desperate, pleadings as I was shaken to the core at Steve’s continued daily decline.

I wrote of going with Steve to his oncologist and neurologist appointments, and having them all tell me it was only a matter of weeks or months.  They saw this rapid deterioration and knew all too well his end was near.

I questioned all of those comments from the medical staff as I would watch Steve have bad days, but then would see him rally a bit and think the Avastin was working, the tumor was shrinking.  I then wrote of my fear, what if the tumor was shrinking?  Dr. Fichtel had said the damage to his brain was irreparable.  How long could we live like this?

This is Cancer.  It is ugly and evil.  It wreaks havoc not only on its victim, but on all those who dearly love that person.  Cancer, it allows all to witness it’s work, carving away at someone once so capable, so full of life, so giving, gifted.  I wrote of my hate of Cancer.

Strangely, around mid May my journaling took on a different feel.  One entry I wrote, “I’m in a daze now, sick to my stomach but though I’m sad—I feel an odd peace that I know is from God.  It’s a feeling of strength, knowing this is going to be the hardest thing I’ve ever done, but feeling I can do it because you are with me Lord--the feeling is strong and I am thankful for your presence.”

After that most of my entries spoke of, while continued sadness prevailed, I also felt an  underlying presence of God, who was guarding and guiding me through each day.   I wrote of tears that flowed too freely, and my deep restlessness concerning the unknown, yet underneath all of that emotion I spoke of a peace and comfort that I knew were God given.

There it is!  This is what I must have been searching for, trying to understand how on earth I got through that dark valley of death.  I have always known my faith brought me through those days and is bringing me through these days, but I think I needed to reread how I processed it all.  I think I needed to have a hindsight view to see how God answered my prayers, how he held my hand through the scary darkness and how he is bringing me now back into the light of life.

I know these next few months of thinking what life was like for us this time last year, won’t magically go away.  There will be tears with remembering those long, hard days, but now I can also go back to those journal entries and read of my thankfulness for a merciful and loving God who cares and is always here.  What a gift!

With love,

Janet

Isaiah 26:3  “He will keep in perfect peace all those who trust in Him, whose thoughts turn often to the Lord.”

Tousled hair...

Steve had a special way of showing affection when in public. Instead of reaching for my hand or wrapping his arms around me, he would place his hand on the back of my neck.  We could easily be in the middle of a group of people laughing and talking and Steve would reach over and gently rub his thumb up and down the nape of my neck and up into my hair.   He would thread his fingers through my hair, playing with it, running his fingers through the strands, kind of jiggling it back and forth. I loved this gentle, tenderness. I would lean my neck back into the cushion of his thumb, much like a dog having her belly scratched, never wanting him to stop.  The end result of this little routine would always end with the back of my hair being tousled.  Not wanting to dissuade him, I would simply walk around looking like I had forgotten to brush the back of my hair...we’re talking serious bed head.  My thought:  Why fix something that has given you such pleasure?

I bet each of you have had a similar experience to this one.  You drive a car you love. Maybe the back left window won’t go down.  Fearful that if you took it in for repair, something else might break in the process of repairing a window you never use, you leave it as is.  Why fix something you love that works well enough?

There is a favorite recipe that you enjoy, every time you eat it there is some ingredient that you find distasteful.  Thinking you will leave that ingredient out, or at least half it the next time you make it...you continue to leave it in, worried it might change the flavor of the dish.  Why fix something you find so delicious?

You have a dog that you adore with all your heart.  She’s getting older and is having complications with her joints.  The vet talks about elective surgery that might help.  There are days the dog is fine, so you opt out on the surgery.  Why fix something that could have worse complications in the long run?

When Steve was diagnosed with an inoperable brain tumor, there was no thought of opting out, of not trying to find a fix, of accepting what we had been told and stopping there.  Despite this horrible news we did all we could to find solutions.  

We found Dr. Chris Bogaev who said yes to surgery, and the surgery was successful.  We went on to research the best place for Steve to go for treatment and found that Dr. Lisa Fichtel was treating patients right here in San Antonio exactly like they were treating GBM’s at Duke and Berkeley (both top GBM centers).  Steve had heavy duty radiation therapy, then a year of a triple dose of Temador.  

I was bound and determined Steve could be “fixed” and I wasn’t going to give in.  Steve, being a physician, knew the limitations of Glioblastoma and was more realistic, but nevertheless put up the greatest fight ever.  His struggle lasted much, much longer than anyone expected.  I’m grateful for those fixes, I would never take anything for those four and a half years together.

What no one bothered to tell me, (I think Steve knew) was that all of that “fixing” of Steve’s tumor also damaged his brain.  The longer Steve lived, the more damage the radiation did in shrinking his blood vessels and Steve became, less perceptive, less keen, less insightful.  Reading grew more difficult, speech, fatigue, balance, memory, all began to slowly fade.  Steve always accepted whatever his current condition was, never bemoaning what he could no longer do, but instead making light of it, knowing this was unfixable, inevitable.

I was not as noble.  I was angry, why bring him this far and have him unable to be himself again?  Why did I have to lose Steve in chunks, our world growing smaller by the day?  What happened to the man I so loved?  The way we knew each other’s thoughts without words, yet grew to be unable to speak understandable sentences to one another? I was mad that the one person who always knew how to solve my problems, lend me a hand, be my go-to person, my best friend, my love was dwindling away and no one could fix him.  No one warned me, but I was afraid that once the tumor came back and the Temador on longer worked, that the Avastin would make Steve even worse.  My fears came true, and his battle worsened and then ended six weeks into the Avastin.

Looking back on these years, I wonder who I was really mad at?  Was I mad at the doctors, who couldn’t cure Steve, or tell me what to expect?  Was I mad that God wouldn’t heal him or help me be more faithful?  Was I angry at myself because I couldn’t give credence to this different version of my husband and our life?  I think the answer is, all of the above. I wish I could go back and live with Cancer differently.

I wish I had taken a lesson from Steve.  To fight until you can’t fight any more, but to accept the inevitable with grace and humor. To understand that there is a lesson and a purpose in acceptance and to know, really know that God is bigger than whatever obstacles we face.  I wish I had leaned into the moment, much as I leaned into the cushion of Steve’s thumb and soaked in all that was possible for me to grow and learn, instead of trying to fix the unfixable.  Knowing my life, much like my hair, would be tousled and bedraggled, confused and unpleasant. I could have captured any small piece of joy that was offered. Instead I tried  with all my might to smooth the tousled life we were living, desperately wanting to fix it.  Take it from me, no amount of trying to "self smooth" will make life what it cannot be.

Looking back, I now understand the lesson and the purpose of acceptance in Steve’s lengthly illness.  I can now accept the difficult times we faced. I can now find purpose and see reason in his slow decline.  I think it has taken me over five years to say good-bye to Steve.  Many of our good-byes were said during the years of his illness when we laughed, cried and reminisced of our meeting, dating, falling in love, marrying, raising Brent and Brooke, having our 6 grandchildren.  We had long conversations about the joy we found in one another.  How we could have never been as happy without the other. How our lives improved because we had each other and because we had all of our children.  We were blessed that we spent hours saying the things that some people never have the opportunity to say to one another.  Those were hours spent tousling hair, wrapped together...and never needing to be fixed.

So what now?  Oh what I would give to feel that sweet thumb press into the back of my neck and have my hair tousled just one more time. Oh how grateful I am that I have those precious memories of loving someone so much that I never once ran my own fingers through my hair to fix what had been such a loving gesture.  I have the memories, and I hold them close to my heart, and I wish, oh how I wish my hair could always be tousled.

Much love,

Janet

Philippians 4:8-9 “Here is a last piece of advice. If you believe in goodness and if you value the approval of God, fix your minds on the things which are holy and right and pure and beautiful and good. Model your conduct on what you have learned from me, on what I have told you and shown you, and you will find the God of peace will be with you.”

Decisions...

It’s odd what concerns people.  I’m finding decisions about big things seem less challenging than making decisions about more insignificant things.

The morning after Steve died, the first thing I remember doing was grabbing a trash can and going to his closet chest of drawers and broadly sweeping my hand across the surface of that chest.  Filled with prescription bottles that had been multiplying over the past months and years, I swiped clean the top of that dresser.  The pill bottles fell with large thuds as they filled the trash can.  That was a decision easily made, I no longer wanted to think of Steve sick.  I no longer wanted reminders of all of those pills that seemed to have been taken for nothing.

For some reason it wasn’t easy, but I felt an urgency to clean out Steve’s closet.  The kids had chosen the clothes they wanted and our brother-in-laws were able to take a few things.  I had hoped Steve’s entire closet would be taken by all the people Steve loved and cared about. That his clothes could be appreciated and worn by people in our life.  That wasn’t the case, in the end, Carolyn and Cindy ended up taking stacks of Steve’s clothes to a homeless shelter.  Steve loved giving his old clothes to CAM, so that was an easy decision for me.  Oh, I kept quite a few of my favorites of his things...a sweater, a few shirts that I loved him in.  I put them on from time to time when I’m hanging out at home, it simply feels good to me.  The closet cleaning was a painful, but necessary decision for me to make, and in my case, I am glad I did it quickly.  

The night Steve died, I took his wedding ring and placed it under mine.  I can’t tell you why or what made me do this, but at the time it seemed almost ceremonial for me.  I wore his ring under mine for eight months.  Once in a while I would ask a friend when would the right time come for me to take it off?  They would shrug and tell me, I would know.  

I guess they were right, because one day as I was slipping on my rings, I left Steve’s in the ring holder.  I felt a stab of pain, maybe even guilt for leaving it there, but somehow it was time.  Several days later, I placed his wedding ring in a box and it sits in the drawer of my night stand.  That was one of the most difficult decisions I felt I had to make.  So odd.

Garage items.  This was an overwhelming task for me as Steve could and did do everything.  I happily gave his large table saws and whatever those huge power cutting table machines were to his brother-in-law Tom and nephew, Bobby.  There were some special tools that I asked Joe and Dennis to look through, Steve would have loved that they are all now using the things he once handled with such skill.

I probably moved more garage equipment than I will ever use or need to the new house,  you never know.  The one thing that I know I will never give away are Steve’s old leather work gloves.  I found them the other day as I was digging through all my gardening boxes.  I had packed them carefully on top of the moving box and when I opened the box they stared up at me and a lump rose in my throat.  The years and dirt had caused them to be almost a mold of Steve’s hands.  I took them out, put them on.  Oh my how I will miss Steve this Spring as I begin to work the beds, fill them with flowers and plants.  We always loved spending our mornings in the yard together.  Never really talking, we didn’t need to, but I loved looking up and seeing him bent over some hole, uprooting some poor plant to replace  with a better one, pruning, smiling, happy.  

I will continue to wear Steve’s leather work gloves.  No, they don’t fit.  They turn my hands orange and nails brown with dirt because the soil gets into the gaps between my hands and what used to be his.  This is one decision that is easy to make.  Steve's gloves, my gloves will always be with me.

Moving, of course that was terribly emotional.  I think Steve and I discussing before hand where I would be living and him being so at peace with me living in this house made my move almost a gift.  A huge, but considerably easy decision.

Currently, I’m struggling with the decision to change my profile picture on Facebook.  What?  This is nuts, who even looks?  No one pays attention.  I do, and the thought of taking that family photo down is a decision I can’t seem to grasp.

The picture was taken last Mother’s Day.  Steve was to live only 8 more weeks.  Looking at his sweet smiling face in that photo is painful.  The Avastin was taking such a toll on his body and looking back I see now how his face was so swollen, so not like himself, and I wonder if he had any idea how near he was to the end of his life?

So, when do I exchange this photo for another?  What will it take for me to be able to do this?  Why is this one of the most ridiculously difficult decisions I’ve yet to make?  I guess I'll know when the time is right.

Finally, and this is a little different because it’s more out of habit than a conscious decision. When will the time come when I quit saying we and our and us and begin saying I and mine and my?

I find myself in conversations and catch myself mid-sentence saying something like, “When we…(I stumble awkwardly) I mean, I decided to remodel the kitchen...”  I can’t refer to the bedroom as mine, it still is ours, even though it’s a completely different room.  I wonder when the time will come that those singular terms will roll casually off my tongue?  I wonder if I will always embarrass myself by referring to us and ours and then have to backtrack, “I mean mine”?

Decisions, some good, some bad, I feel like I’ve made a million since the day we heard the words “Stage Four Glioblastoma Multiforma.”  Decisions making seemed so much easier with Steve.  What a gift, that I fell in love and married a man who together made resolving issues feel like a team effort.  Oh there were times we were at odds, but there was never anyone like Steve, one that I could sort things out with, mull over, discuss ad nauseam.   This purpose, this resolve, this single-mindedness, bound us together, wrapping a cord around us that enabled us to grow more dedicated, loyal and steadfast to one another with each experience we conquered.   

I never thought about the day I would have to make decisions alone.  I find it difficult now to do this without Steve, I know there will be decisions that will continue to have me stymied in the future.  Who do I go to when I have doubts or need wisdom concerning life's issues, now that Steve is gone?  I'm finding this one of the obstacles of being a widow.

Often life isn’t what we want it to be, nor expect it to be, but life goes on and decisions will always be a part of living.  I’m learning when I can’t make a decision, I need to sit and wait.  I believe God will show me the right path in his own time, in his own way, all I need realize is  that, even though Steve is no longer by my side, I'm never alone.

With all my love,

Janet

Psalm 139:1-3 “O Lord, you have examined my heart and know everything about me.  You know when I sit or stand.   When far away, you know my every thought.  You chart the path ahead of me, and tell me where to stop and rest."

Updates on past blogs...

Thanks to all of you who have offered to share your handymen with me.  I hired a handyman today and he is coming tomorrow for a day full of tasks. I realize I need help doing the things I am failing miserably at trying to do.

More important than finding a handyman, I have found the miracle fix for all of us who have the lamp fetish...Michael Baker, you need not read on.  Everyone needs more than 7 lamps!  

Here it is. Bos gave me the most amazingly incredible gift and it is guaranteed to make anyone with more than 3-5 lamps in a room do backflips all over the place.

Etekcity Remote Outlet Switch is a must.  Let me explain the genius of this product.  

•   You can order however many you want on line and they arrive within 2-3 days.
•   You can order packages of 3 to 5 outlets, depending on the number of lamps you    want to turn on with ease.
•   You take each packaged plug, plug in your lamp according to the number on the remote and voila that’s it.  You have one remote to turn off and on 3-5 lamps at a time!  

This is so cool!  It makes you want to go around and just flip lamp lights on and off willy nilly whenever you feel like it with no effort whatsoever.  

Remember the “Clap On/Clap Off” devices?  I gave one to my parents when they first came out on informercials.  My father spent most of Christmas sitting in a corner clapping is hands off his arms and that dad gum lamp never did respond.  

Well, this is nothing like Clap-On, this is smooth, can you feel my excitement???  Okay, first the negative, the socket that you have to plug into the wall is large.  If you have another extra-large plug, both will not fit into one socket.  Here’s the little key to that problem, go dig out a power strip and you can put your Elekcity Outlet in, as well as countless other plugs.  One other negative, oh I forgot to mention, after Bos gave me a package of 5 plugs, I ordered 2 more packages of 5 and one package of 3.  Hey, I admitted to having a lamp fetish and I have honed down my stash to a necessary 30 lamps.  Not too bad since I have downsized by almost 1/2 the square footage of my last home.  Okay, I admit, I have a problem with lamp light love.  

So back to the negative, you must use the remote designated to each outlet in the package for it to work.  In other words, you can’t turn off your bedroom lights with your living room remote if you have more than 5 lamps in said room.

Now the good news is, you can use the 5 outlets in different rooms.  Say you have 3 lamps in your den and 2 lamps in your bedroom (I would say you need more lamps) but the reality is you can use the same package and all 5 plugs will work on the one remote no matter where they are in your house.

Finally, you can get more out of your Etekcity outlets if you can use a multiplug or power strip and plug several lamps into one Etekcity plug!  Terrific!  I can turn on up to 3 lamps in close quarters and only use up one Etekcity plug.

 View videos below to see the way the Etekcity really works!  (I wonder if I could do an informercial for them and get even more plugs as a payoff?!

I’m telling you, I have heard from too many of you after my lamp fetish admission.  I know that there are lots of us out there.  So pay attention and order now.  It’s just too satisfying!

I need a life, 

Janet

Matthew 5:15 “ Neither do people light a lamp and put it under a bowl. Instead they put it on its stand, and it gives light to everyone in the house.”