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.”

So where did my body go?

Me:  Hi, my name is Janet and I’m limited.

Group:  Hi Janet!

Me:  Not only am I limited but I’m hardheaded, impatient and prideful.

Okay, so I’m not in any kind of support group...yet, but if I were this would certainly be my confession.

I have suddenly discovered that while my 59 1/2 year old self may look 62+ years old on the outside, my mind hasn’t convinced my body that I am almost 60.  

Here’s my recent scenario.  As some of you know who have been reading his blog,I fell walking my new/old dog last September.  I really bit the dust by simply tripping over a bump in the road.  Splat I was down before I knew what had happened.  That was my fall # 1.

The second came Saturday night.  I will say circumstances were beyond my control...a bit.  I was attending a lovely wedding and the reception was so fun.  Brooke and Jared were there along with both Midland and San Antonio friends and I was enjoying every second of it.  The dancing was outside under a large tent and though it never rains in San Antonio, that night it was a deluge.  The dance floor turned to mud and we were all slipping and sliding and having a great time.  Around 11 p.m., wonder of wonders, 15 foot puppets on stilts dressed in S.A. style Day of the Dead bridal party attire entered the room and the festivities went to a whole new level of fun.  While in the middle of a Conga line, I managed to trip over one of the tall people and land flat on the muddy dance floor.  Okay, I will admit I had been a bit over served, but again I found myself a bit bloody and muddy as I limped home.  Embarrassed, I did learn that I was one of quite a few people who took a spill that night.  Still, I must count that as yet another tumble.

Two days later, Bonnie, Bos and Audrey were visiting.  It was a beautiful day after a weekend of rain and sitting on my patio I was driven to hang some large metal wind chimes that I had yet to get to since moving.  No time like the present, I went to grab an 8 foot ladder.  Bos and Bonnie both voiced this to be a bad idea, but I was determined to get this task scratched off my to-do list.  I positioned the ladder and admit the ground was soggy from our recent rain, but oh well, I would be fine.

A little aside here.  When Steve and I talked of me moving into this house after he was gone, his one request was that I NEVER climb the rickety fold down attic stairs.  He was so fearful I would fall and made me promise I wouldn’t put all of my Christmas stuff up there and be climbing up and down that ladder.  I did as promised and built a room off the garage for my Christmas stuff.  

I will admit that while the movers were moving me in I did climb into the attic, just once but there were 5 men around.  They would hand me up all the left over baby items...cribs, carseats, highchairs, that I am no longer using...at the moment...but needed a place to store them, just in case another little one or two may appear--Brent?!?

So I did break my promise, just once and Jared has managed to keep me on one level since, as he and Brooke are just as fearful of me on a ladder as Steve was.

In fact, both Brooke and Jared seemed incredibly over protective and ridiculous concerning me climbing any height and have asked me repeatedly to let them do the climbing.  I mean come on, I’m steady on my feet.  I’m in fairly decent shape, I walk daily, I have been lugging heavy boxes in and out of houses the past month.  I have contorted my body in unimaginable ways to plug cords into sockets discretely, I have tottered on my ladder countless times, reaching far beyond my limit to place something high on a shelf, making sure it was positioned exactly where it looked best from ground level. I could go on and on about my strength and agility, but I best get straight to the point.

They were right and I was wrong.  Ugh, I hate admitting that, but it is so true.  So back to my ladder in the mud positioned by a tree with Bos and Bonnie telling me they didn’t feel I was being cautious--in other words I was being dumb.  Stubborn and self-assured I climbed that ladder to the top rung, Bonnie swung me the metal chain, I grabbed it and waited for her to lift the heavy, really heavy wind chime up to me.  Once I grabbed hold of the wind chime, I felt the ladder shift with the extra weight.  I was quickly losing my balance just as the ladder was shifting.  The wind chime was too heavy, I let go and gravity grabbed me by the hand and I started going down.  All I could see below me were large river rocks, metal flowerbed edging and the bottom ledge of a wooden deck.  It was going to be ugly, all I could do was jump in order not to land face first.  Hoping I would land on my feet, which I probably could have done 5 years ago, I didn’t.  I landed on my arm, hip and whatever else followed.  Bonnie was hit in the head by the chime and she also was gouged probably by me.  It was not good, not pretty and I am still a mess.

So where in the world has my body gone?  When did it happen that I became my parents, tottering and falling?  That’s not supposed to happen until you get really old, then your children get you one of those med-alert buttons that you push because “you’ve fallen and can’t get up!” 

I’ve never minded growing older.  I’ve always liked each stage of my life, never being one to bemoan wrinkles and sagging (okay, I do, but just a little), I’ve always embraced aging, but that was when it dealt with appearance not aptitude. This is not acceptable.

I think deep down I have been trying to tell myself, I must continue to be independent, especially now that I am alone.  I so don’t want to be one of those helpless women who is constantly calling family and friends to come rescue me from one of my mishaps.  No, I want to be the independent single woman who can fix her own toilets, repair her own fence, clean out her own gutters, kill her own chicken and cook it...okay that’s going too far!

I have finally realized, I am almost 60.  My health is good, but I am not capable of doing all the things that need doing.  The fact is, I wasn’t capable of doing them at 40 either, but Steve was always more than capable and did so much work around the house and in the yard with such ease that I never thought twice about it.  This is another of those times, when I shake my fist, stomp my feet and want Steve back.  I want my old life back.  I want that simple ease of asking him to fix something and knowing it would be done before the sun went down.

We don’t always get what we want.  We can’t always do all the things we wish we could do.  Life deals us our hand and we, I must learn how to play it.

They say third times charm, well believe me, I am waving the surrender flag.  No more ladders and I am accepting the realization that along with wrinkles, drooping and sagging comes some imbalance, increasing frailty and acceptance that I can simply accept this whole aging process with some grace.

Oh, just one thing...I’ll never quit dancing!

Much love,

Janet

2 Peter 1: 5-8 “So don’t lose a minute in building on what you’ve been given, complementing your basic faith with good character, spiritual understanding, alert discipline, passionate patience, reverent wonder, warm friendliness, and generous love, each dimension fitting into and developing the others. With these qualities active and growing in your lives, no grass will grow under your feet, no day will pass without its reward as you mature in your experience of our Master Jesus.”