Hurdles...

It is 8 P.M. on Saturday night, tomorrow is Steve’s birthday, would have been Steve’s birthday.  As I sit to write this entry, my first thought is I will never enter it on this blog.  I’m writing because I’m not sure what else to do with the hours ahead of me.

I worked hard in the yard all day today.  Planting, fertilizing, pulling weed after weed.  Midday it hit me, I felt strongly that it was a nudge from God.  I needed to go see Evelyn, Steve’s mom.  Evelyn is an amazing women in her 90’s.  She is brilliant, sharp and capable, but she has physically had an incredibly rough year.  It seems she gets over one medical malady only to be faced with another, she’s one tough cookie and she endures.  

I have been a terribly negligent daughter-in-law.  I love our visits, yet I find I take little time to go and see her.  Life and stuff gets in my way and before I know it has been weeks since I saw her, much less called.  Guilt fills me and I question how I could allow this much time to pass between visits.

So, today midway through my digging and tending, I got this immediate urge to visit Evelyn and I needed to it before the sun set.  I made a run to HEB and bought a bottle of wine, bread, chips and ingredients to make jalapeño pimento cheese and mango mousse.  I called to make sure she was up for a visit, her response was so charged with surprise and joy, it made me feel guilt ridden, as I visit too rarely.

All I could think of was, what must it feel like to be reliving the birth of your first born and only son, only he is no longer here?  No mother should ever have to experience the celebration of the birth of a child without the presence of that child.

So off I went.  Packed up wine, wine glasses (one should never drink wine unless it is out of a wine glass), pimento cheese and the rest.

I walked in to her apartment at The Madison, an independent living community, and announced it was Happy Hour.  We drank our wine, nibbled on the pimento cheese and chips and caught up with our lives.  

We spoke briefly of Steve’s birthday.  Evelyn told me of the day Steve and I came to visit her, the day he told her of his brain tumor.  Her words were, “I will never forget Steve sitting here, he told me we was going to do ‘this’ well.”  She lightly touched her heart, tears welled up in both of our eyes and we spoke of Steve’s courage, strength and wisdom.

I came home to an empty house, an empty heart, and a big ole pity party.  I am at such a loss for words, for feelings.  So I write to fill this space.

Tomorrow is another landmark day to hurdle.  Then there is Easter and following that the maybe 60th,  Annual Boswell Family Reunion in Salado (an incredible extended family of cousins, who love and care for one another in an amazing way).  These are big hurdles and they are right on top of one another.  Can I leap each hurdle without crashing into the ground?  Can I conquer each feat without falling flat?  I pray my anticipation is worse than the actual occurrences (they usually are).

Steve & Bonnie with the Easter Bunny

Boswell Family Reunion 1950's

Easter 2012

Boswell Family Reunion 2005

Boswell Family Reunion 2013

Brooke made sure tomorrow, the birthday, is covered.  Wisely, she had Harper and Harris call me to ask me to go with them to Disney on Ice tomorrow afternoon.  Brooke had already broached this with me, knowing Steve’s birthday was going to be difficult.  I had put her off, saying I was fine, they needed to spend their Sunday, Palm Sunday, as a family.  

Miss Smarty Pants outsmarted me.  Anyone who has grand children knows a grandparent can’t say no to a request.  I have made it my mantra with my grand children.  I will always be there for them.  I will do anything I can to make their requests possible, and they can count on me for any thing, any time, any place.  So Brooke, had the littles call me, of course, I said yes.  A brilliant move Brooke, tomorrow will be filled with attending Palm Sunday worship with my children, Disney on Ice (I’m sure pictures will follow) and dinner, on me!  I have amazing children, thank you Brooke and Jared for sharing this day with me.

Before sitting down to write this, I was washing my face...doing my nightly almost 60 facial regime.  I sat looking at myself in the mirror.  I looked so sad, so vacant, so tired, so lost.  I smiled a great big fake smile that quickly turned sour.  I quickly turned out the light and came here to write this...

Life can be rough, it can knock you off your feet, it can deal you a hand that you want to slam on the table, throw in your chips and walk away...or you can make yourself smile that great big fake smile and thank God for every blessing he has enabled you to have and move forward...one hurdle at a time.

My choice:  I’m going to clear every hurdle and look straight ahead, for I continue to have much to be grateful.

For what it’s worth,

Janet

Psalm 31:14 “But I was trusting you, O Lord.  I said, ‘You alone are my God; my times are in your hands.”

Organizing...

I have spent the last few weeks striving to uber organize everything in my new home. From alphabetizing my spices, to compartmentalizing garage tools, to finding spots for office junk...files, supplies, pens, stamps, it goes on and on.  I thought if I did this now, while I’m still settling in I will be one of those people who “has a place for every thing and every thing is in its place.” Side-note: “Goodrich is known for having the first printed citation of the epigram: "Have a place for every thing, and keep every thing in its proper place.[2] The phrase was published in an article called "Neatness" which Goodrich published in The Ohio Repository (Canton, Ohio), in December 1827.”

So my neatness began.  I started with my closet.  Leaving a home with all built-in closet drawers, I bought some of Container Store drawers for my non-hanging clothes.  While at the Container Store, I shopped the isles trying to decide which pieces best suited my needs.  There was one piece that made me laugh out loud.  It’s called the 32-Compartment Drawer Organizer.  

32-Compartment Drawer Organizer

Laughing, because several years ago a group of our friends had gone on a short girls trip.  We had two suburbans full of women driving home and the conversation in our car somehow turned to who was the most organized of this group.  I will say, up front that of all of these 10+ women I am most likely the least organized.  Most of their homes are clutter free, each drawer and cabinet are neat and tidy and most impressive are their garages...cleaner than my kitchen.

We were bantering back and forth about who wasn’t really organized and what their secret shortcomings were that kept them from being crowned The Queen of Organization. It was then the question simply popped into my mind, so, as always, I blurted out “What does your underwear drawer look like?  Do you fold each pair of underwear and have a special spot for them, (thus needing the 32-Compartment Drawer Organizer from The Container Store) or do you take you underwear from the laundry room and simply dump it into its designated drawer?”  

I think we were all surprised to find out who the folders were from the dumpers.  We then called car #2 asking them if they folded or dumped their underwear?  You can only imagine where these conversations lead.  Even now, years later someone will randomly bring up the folding vs. dumping issue, laughter ensues.

I think it was interesting that the people who seemed so together and organized were underwear dumpers and only a very few were actually folders.  Why?  What causes some people to have the need to have everything in its proper place, yet underwear...is simply dumped in a drawer.  Not that any of this matters, just a little mindless fodder...are you a folder or a dumper?

Me?  I’m a dumper.  I can get organized, I just can’t stay organized.

Example:  Every Fall and Spring season I reorganize my closet.  You know, change out sweaters for shorts, boots for flip flops.  At the beginning of each season some power overwhelms me and I go hog wild and spend hours organizing my closet.  I neatly fold all my exercise clothes, label my shoe boxes, and I hang my tops and pants by the color code method.  I have as many white shirts as I do lamps... so I have all my white shirts on one rod, then all my black, and on through the rainbow.  At the end of my organizational frenzy I’m happy as a clam, standing akimbo, looking at my perfectly neat closet.  A masterpiece!  Even my drawers are in order, shorts folded, socks matched and yes, my undies folded and neatly stacked. 

White color coded shirts

Rainbow color coded shirts

Then comes a day when I’m looking for just the right outfit.  I start yanking tops to go with pants, no that’s wrong. I pull skirts, then jackets, then more pants, different tops.  Shoes are strewn all over the floor, boxes tossed to the side, trying to find the pair that looks right.  This goes on until I have a heap of clothes lying on my closet floor and I’m late for the event.  I pull on whatever, and my once organized closet has become a FEMA Hazard Zone.   

Coming home, I’m totally over the whole masterpiece closet fabulousness.  I throw my clothes back on any hanger I can find and stuff them into the first available spot.  From that point on until the following season, my closet is “Jimmy crack corn and I don’t care!”  Not to mention my underwear, p.j.’s, and workout clothes drawers, they lasted orderly for about a week. Oh, and no shoe ever finds it’s way back into the marked box until it is put away for the following season.

So thus is my life.  I guess I’m doomed to living life like a slob behind closed doors. I suppose I will continue to plow through drawers, cabinets, closets and a garage looking for what I know must be there somewhere, until I can’t stand it any longer and I have a bastion of sanity and begin reorganizing, again.

Do I need a 32-Compartment Drawer Organizer for my life?  Have I learned that no matter how much one plans and organizes, life always throws a kink in the “proper place for everything” mindset?  No one can keep their lives completely tidy and compartmentalized.  Does anyone really want to live life so regimented, so confined?

Maybe that’s why I’m an underwear stuffer, it’s just not worth the time.  I’d rather spend five extra seconds looking for a proper pair of undies than spend an hour setting up the 32-Compartment Drawer Organizer...not to mention, does anyone really have 32 pairs of undies?  I thought I was weird with 43 lamps!

After Steve discovered his time here would be shortened he became determined to have every thing in its proper place.  He spent long days making sure the house was in tip-top shape, all appliances, sprinkler system, heat/ac, roof, yard, money matters were in perfect order.  

Steve always knowing there was a place for every thing!

Umpire, Steve directing at US Open

Grandy in charge!

Then, something would go a rye.  We would find one of the cars needed some huge repair, an air conditioning unit needed replacing…it was constant, always something.  It drove him crazy as he so wanted to leave me with no issues, no problems that needed solving.  I tried many times to stop his need for orderliness, but it was useless, that was Steve.  He was a fixer, a caretaker, a giver and a bit of a perfectionist.  Life and time got in his way, but oh my, did he leave me with so little to deal with…my precious orchestrator.

Truth: I do have a 32-Compartment Drawer Organizer, he is my living Lord and if I take the time to go to him daily, sometimes hourly, I will find he will direct my path, keep my life in order and there will be no place for FEMA Hazard Zone markers.

Sure, I go through times when I’m frantically searching for just the right answer.  I pull out all the stops trying to find that solution on my own.  My life becomes out of control, full of fear and questions, overwhelming, a giant heap of a mess.  If I stop, and go to my Organizer, I find, in his perfect time he will show me how to find a place for every thing and a way to keep every thing that truly matters, in its proper place.

For what it's worth,

Janet

Psalm 32:8 “I will instruct you (says the Lord) and guide you along the best pathway for your life; I will advise you and watch your progress.”

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.”