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Navigating life after losing my husband.

Thursday, May 31, 2012

Glad for the rollercoaster

I got up at four this morning after popping an Ambien and crawling into my own bed at midnight. Four straight hours of sleep and not being jack knifed in a hospital vinyl chair is a blessing. Shouldn't be blogging, should still be sleeping.  But my body and mind won't let me sleep any longer. Plus I need coffee. That addiction can be a curse.

Dave, just before being called to surgery
So here goes. I'm going to blog but try to keep it short and get ready for another day at the hospital with Dave.

We were elated when Dr. Marsh met us after the surgery was done with no complications.  The tumor was removed without damaging the nerves.

Dr. Marsh said that after Dave fully recovers, he should be as good as he was prior to surgery. I passed the good news on to the prayer chain and posted it on Facebook.

But reality kicked us when we finally were able to see Dave after he got to the ICU. The surgery may have gone well but it was still major brain surgery.We couldn't hold back tears seeing him, his head wrapped and his eyes unable to focus.

It is evident now how serious his brain injury was from years ago. His ability to compensate has been stripped. It's like he has to start all over again. Dave has two new impairments--double vision and loss of feeling on one side of the face. But the doctors are confident that those impairments are temporary and will get better after the swelling goes down.

They say crying is good, that you shouldn't hold back. That crying helps. I don't think it always does. At least, not after you've cried yourself to the point of dehydration. I wish I could turn off the faucet, but I can't. I hurt to the core for Dave, not only for what he is going through now, but what he's already been through and has been dealing with all these years. It breaks my heart that I didn't fully understand and wasn't more patient.

People's words on Facebook have been so kind and encouraging. We've heard from friends we haven't seen for over 20 years. I've reconnected with some of Dave's extended family who live in California and we rarely are able to see.

I posted that first night after surgery that it was rough and it was going to be a roller coaster. Dave's niece, Jamie, who lost her Dad (Dave's brother) to cancer several years ago, replied:

Aunt Jacci, I know it is hard right now and even though the surgery went well, recovery will take time and patience. It will be okay though. Just remember it would be worse if there were no roller coaster left to ride!

Jamie, thank you. It was exactly what I needed to hear. Dave's still here. We have our friends and family. We have the Lord.  We're not alone. We'll ride it out together. It's going to be okay.









Sunday, May 20, 2012

Dave

In a week, Dave is having brain surgery. That tight ball of anxiety with which I'm so familiar is not there. Somehow it seems wrong. If there was ever a time to worry, this would be it.  I wonder if it's peace. Or if it's a denial mechanism.
Dave, as a freshman.

I guess I've gotten to this place from being married to Dave for 25 years. I've never once heard him say that he's worried. Concerned, yes. But not worried. He shrugs off the small stuff. And it's all small stuff compared to what he's been through.


The course of Dave's life changed when he was 17. He grew up in California. A gifted athlete, he was the star running back on his high school football team. By the end of his junior year, colleges were already looking at him including Penn State and West Point.  During football practice his senior year, he began having severe headaches and blurred vision.

The doctors thought the headaches were caused by being worn down from mono combined with the effects of multiple concussions playing football. He went to an optometrist to have his eyes checked. The optometrist examined him and sent him to a neurologist that same day.

He had a brain tumor growing around his optic nerve. He had surgery to remove what was a benign meningioma. He began recovery and was hoping to finish out the football season.

But the headaches returned. Another tumor had grown in the cerebellum, the area that controls balance and coordination. He underwent a second surgery. And then another emergency surgery after he started convulsing. His brain was swelling and hemorrhaging. One-third of the right hemisphere of his brain was removed. A fourth reparatory surgery was done to place mesh where the brain tissue was removed.

The doctors said he wouldn't ever be able to walk again. Dave's incredibly stubborn. Tell him what he can't do, and he'll set out to prove you wrong.

Dave had been the golden boy. The once star athlete had to relearn how to walk, talk, and write with his left hand instead of his right. The simplest tasks required intense concentration to compensate for traumatic brain injury. Playing sports was no longer an option. He finished the school year at home with a tutor. At graduation, he walked down the aisle assisted by his brother, Mike, at his side.

In his brokenness, he turned his life over to God. He spent the next five years rehabilitating himself to the point he was able to start classes at the community college and hold a job.

I met him several years after this. I admired his faith and how he had overcome adversity. He was good for me. He was the only guy who wouldn't put up with my flakiness. He told me, "I don't have time for this." We were married eight months later.

After we had Amber, we moved to Minnesota. We started working at Mayo; Dave started  to be seen by Neurology. A scan showed a small tumor, most likely residual tissue left from previous surgeries. Since it was small and wasn't growing, it was decided to monitor it with yearly scans. Each year the MRI showed that the tumor had not grown.

But we both felt like we were living with a time bomb. One year Dave's regular neurologist wasn't available. He saw another doctor, a soft-spoken man from India who was about to retire. I expressed my fears. He gave wise advice that I have hung onto ever since. "Leave here, enjoy your life and don't worry. You could live worrying about what may never happen, and you will have lived in fear needlessly. If he does one day need surgery, we will help him, but you will have lived through the experience twice."

Matthew 6:34 says this and has special meaning,"So do not worry about tomorrow; for tomorrow will care for itself. Each day has enough trouble of its own."

Seven years ago he did get another tumor, this time in his spine. He underwent a fifth neurosurgery. Meningiomas are the most common type of brain tumor. They are almost always slow growing and don't grow back when removed. Dave's are atypical, fast growing and which often reoccur in other parts of the brain or spine. The spinal tumor grew back in six months and was treated with radiation.

Six weeks ago, an MRI showed he had two brain tumors; the original one having tripled in size. He is scheduled for surgery May 29th. We are grateful to be at Mayo. What are the odds that this California boy would end up in Minnesota working for Mayo which is rated number one in the country for Neurosurgery?

There is risk for further impairment, although Dr. Marsh says the risks are low and he will do his utmost to avoid damaging the surrounding brain tissue.

We have relative peace. I enjoy my days not thinking too much about what's ahead. When I do tell someone about Dave's surgery I get emotional. Mainly because I'm grieved that Dave has to go through this again. I so hope and pray he comes out with no further impairments.

The hardest part about brain injury is being misunderstood. Until you know what he's been through, Dave can come across as abrupt as he compensates for the part of his brain that's missing. He has many physical limitations but has compensated so well that it is often too subtle to detect.  Every day is a struggle.

He has persevered where most people would have given up. He has never wavered from his faith.  He's one of the most unpretentious guys I've met.  He unapologetically tells it like it is. He has a dry sense of humor that's hilarious. He's an amazing guy.

Despite its ups and downs, our lives have been rich with blessings. We have three beautiful kids,  supportive family and friends, a wonderful church home, and a God who is always near.  Whatever lies ahead, we'll deal with it, praying, being grateful for the blessings, and allowing God to use our circumstances for good.
Our beautiful family.