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.
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.”