Update - Slow and Steady

The cumulative traumas of recent surgeries along with all the associated medications and chemotherapy have combined to make this a challenging recovery. Harold’s body is taking a beating, but day by day I see subtle improvement. Our strategy is one of patience as Harold makes slow and steady progress. 

Harold is working with a physical therapist to strengthen his left leg and improve his balance. There is an expectation of full recovery as his body gradually heals. Meanwhile he is able to navigate around the house with the help of a walker. Recovery will be slightly interrupted on Tuesday as Harold goes in for another gamma knife surgery.  The tumor removed in the May 2^nd craniotomy was active melanoma. It was growing on a major blood vessel located near at the back of Harold’s head. The surgeon could not cut this important blood supply but was able to cleanly peal the tumor off, leaving no microscopic evidence of melanoma. He will now treat that area with gamma knife as a further precaution against the tumors coming back.

We had debated last week about having Harold come home or having him stay in the hospital for intense rehab. We are very grateful he was able to come home. Despite Harold’s physical challenges we have enjoyed spending time with all our children and grandchildren. We have been the recipients of generous acts of kindness and have enjoyed the company of very dear friends. 

Update - Walking Again

Harold is much improved today. He was able to get out of the bed with minimal assistance and had the energy to work with the physical and ocupational therapists. Harold moved well with a walker and even climbed a flight of stairs. He does have some balance issues and weakness but has also shown improvement there.

We had the option of staying in the hospital for more acute rehab, but Harold may improve too much to qualify for it by the time they have a bed. We've decided on outpatient rehab and are going home today. Wahoo!

Update - Still in Hospital

Last week's surgery caused some weakness in Harold's left leg, It wasn't apparent until he got up to walk and discovered he couldn't stand. That startled everyone as we're use to Harold doing laps around the critical care unit. Saturday when Harold tried again he could move his leg while supported by a walker and a nurse on either side. His steps were slightly mechanical but he could move. It was a huge relief.

Things got even better on Sunday as Harold was able to get in and out of bed and use the walker without additional assistance. He visited with his surgeon later that day who added more encouraging words. He reminded Harold that immediately after surgery (while Harold was too groggy to remember) he had tested his strength, asking him to lift and move both legs. Harold had been able to do it. We were aware this surgery could cause permanent weakness so it was a relief to hear this mobility problem may be temporary, a result of swelling at the surgical site. "Give it a month," he said. "You will see big improvement."

I usually stay with Harold round the clock, but started feeling sick Saturday night and went home to rest. I didn't witness Sunday's progress but Harold had called with the report, even offering the possibility of coming home that day.  We decided to wait until he could be evaluated by physical therapy on Monday. Greatly encouraged, I arrived early this morning wanting to be present when doctors and physical therapists arrived. The Harold I saw was not the one reported the day before. His condition had literally changed overnight.

Harold was slow to wake and when he did he was hazy and couldn't finish a sentence. He had a headache. He needed help getting out of bed and and taking a few steps sapped his strength. I immediately suspected the cause, having watched Harold so closely this past year, and reported my concerns. My suspicions were soon confirmed. Harold had been tapered off his post-surgical steroids too fast and swelling was taking its toll.

Harold has slept much of the day which is probably the best thing he can do right now. Appropriate medications have been given and we anticipate marked improvement tomorrow.

Update - CCU to Regular Floor

Today Harold was transferred from the Neuro Critical Care Unit to the regular neurology floor. It was a challenging day, but this evening he is resting comfortably and is able to keep food down. Harold is experiencing some weakness on his left side but there is hope it will resolve as the post surgical swelling resolves.

Perspective

When Harold had his first brain surgery, his seventh floor hospital room allowed a panoramic view of a construction site. At that time it was a massive framework of girders many stories high. Cranes hovered around the perimeter, hoisting up supplies to the men in hard hats confidently walking the open structure. We’ve felt a connection to the building ever since and have watched the construction during subsequent visits and hospitalizations.  It opened just days after Harold’s May 2nd surgery and became the new home for neurosurgery. We were disappointed to miss using it.

It wasn’t our motivation for coming back but it’s nice to enjoy the new building now. The Pre-Op and the Neurology Critical Care Units are spacious and peaceful compared to the cramped curtained off overflow units the hospital was forced to use before. The surgical waiting area was truly welcoming and was the setting for much of my time yesterday.
 
With memories still fresh from two week before, I surveyed the waiting room and wondered about the people sitting there. What were there stories?  It was a fleeting thought as I sat in the nearest chair and began to read. A man and his teenage daughter joined the woman sitting two seats away. I moved to give them space. Their conversation broke the quiet isolation. When their topic turned to gardening I looked up and eventually joined in. We enjoyed a lively exchange of ideas that lasted several hours.  

Turns out this family was not waiting for someone already in surgery. They were waiting for surgery. The mother’s scheduled time had been delayed. Eventually she went into pre-op but the man and his daughter stayed and talked. By then Harold’s sister, Louise had joined us. The man told of his work as a defense attorney and then as a prosecutor. We learned about the significant health challenges his family had faced and the financial ramifications of being denied insurance coverage because of preexisting conditions. Then Louise asked this question:  “How have these experiences affected your feelings toward God?”

There was a pause, then he looked at us and said, “I’m glad you didn’t say the word religion. I have absolutely no use for organized religion. And as far as God? Well I’m not sure.”

This highly educated man then launched into a description of the vastness of our universe and the creations in it. He contrasted that with the smallness, the insignificance of man. “We are like dust,” he said. He wasn’t sure it was necessary to have God. “Pure science could be enough.”  He said this with no animosity but with the voice of a man questioning himself.

I asked if I could share my perspective. He welcomed it. I expressed an appreciation for his thoughts on the vastness of the universe and the smallness of man in comparison. Then I told him a portion of my own cancer experience and the feeling I’d had of being carried, even cradled through it. I shared that I have that same feeling now during Harold’s battle. I told him that as small and insignificant as I am, the God who created this universe is aware of me. He answers my prayers.

Just then this man and his daughter were called into pre-op to see his wife. They jumped up . . .  then he turned back. “I don’t want to leave, he said, “this is just getting interesting.”

But that was it, another small moment connecting.

I’m grateful for the chance to hear this man’s story and perspective and to share mine with him. I’m grateful for my knowledge of God, my loving Heavenly Father, and his son, Jesus Christ.  Because of that knowledge my life has purpose. I am not insignificant. I am a part of a plan as real and tangible as the blueprint used to create this new building.  It is God’s Plan of Happiness

Update - Out of Surgery

Harold is out of surgery and his surgeon just came out to give me the report. He said Harold came through fine, was awake and talking, and that I will get to see him in a few minutes.

Our surgeon was encouraged by what he saw today. None of the tissue in either surgical site looked like active cancer. Instead it looked like necrotic or dead tissue. Labs will confirm this but it appears the gamma knife treatments are doing their job. Our medical team isn't sure why some of Harold's treated tumors linger to cause irritation and swelling instead of being absorbed away. Unfortunately some do, but it is clear we are making progress in stopping the spread of new tumors in his brain.  

Update - Into Surgery

Harold was taken into the operating room at 11:00 am this morning. Surgery is expected to last about six hours. Things have come together very well today and we both feel calm about this decision.

Update - Surgery Tomorrow

Recovery from Harold’s May 2nd surgery hasn’t gone as well as hoped. He saw improvement for a few days then regressed as he tapered off the post surgical medications. He became dizzy and weak. Sunday morning he had a mild seizure so his medications were increased.  Then Monday he was not able to keep any food, water, or medications down. By Tuesday evening he was dehydrated and was admitted to the hospital for IV fluids and medications. He is feeling much better now.

We don’t know the reason for the stomach upset but it may be a blessing in disguise. Being in the hospital has allowed Harold’s medical team to look into possible reasons for his continued dizziness, etc. An MRI taken last night has confirmed the probable cause. Harold still has a lot of swelling around a previously treated spot near the top of his head. We have been watching it for the last several scans, hoping it would resolve on its own. Now we believe it is the source of his problems. In addition there is another previously treated spot above his right eye that has grown.

There is a risk that surgery could cause permanent weakness on Harold's left side; but delaying treatment in hopes these areas will resolve carries its own risks. Harold has decided to take aggressive action and have both surgically removed. It usually takes several weeks to get a date for surgery. Amazingly a time opened up. Harold will have craniotomies #7 and #8 tomorrow afternoon, May 16^th. We ask for your continued faith and prayers in his behalf.   

Update and Some Thoughts

Harold is recovering well and in many ways feeling better than before his surgery. We’ve walked laps around the neurology floor and hope to be released to go home tomorrow.

Meanwhile I’ve had a lot of time to reflect. Here are some thoughts.

At what point do traumatic experiences become routine? I never thought brain surgery would seem routine but by the time we approached craniotomy number six, it was. Sheer repetition had removed many of the unknowns and blunted our natural anxiety. Blunted but not removed.

We arrived at the hospital fully aware of what to expect. Check in, MRI, pre-op, surgery, waiting room hours, recovery, critical care, long sleepless night. Harold probably had the pre-op questions memorized and could have saved everybody time by just saying yes, yes, yes, yes, no, no, yes, yes, yes . . . etc. In some ways it saddened me that we were less alive to the moment. Was today’s surgery less critical than Harold’s first? No. Was the outcome today less pivotal to the hopes and dreams of our future? No. So what had changed and was that change good or bad?

These were my thoughts as I started the waiting room vigil, but I put them aside, intent on loosing myself in a book. I almost succeeded.

I was first pulled out by the weeping of a women seated on a sofa across from me.   I tried to catch her eye, to see if I could help, but she wouldn't look up. Then I was distracted by a call from family wanting an update on Harold. Ironically, when I ended the call the woman on the sofa reached out to me, apparently overhearing my report. Then I learned her story. 

She had been in the waiting area since early morning and was by now overcome with anxiety for her husband, the victim of a horrific motorcycle accident. This wasn’t new trauma. The accident had occurred four years before. This was the twelfth in a series of surgeries to repair their loss. She understood the long road to healing and acknowledged the hand of God in their lives. Repetition had not removed her pain. Sometimes it overcame her but that pain also allowed her to recognize the needs of others.

I met another woman, the daughter of a man fighting late stage metastatic cancer. She was present to support him as he underwent surgery to remove tumors that had spread to vital organs in his body. She seemed emotionally detached as she described his battle which started with a melanoma tumor in his brain twenty years earlier. That diagnosis, so similar to Harold's, caught my attention. Twenty years! Did she realize how fabulous that sounded? Her father, now in his 70’s, had survived with cancer for twenty years.

There was the stoic wife of a man undergoing back surgery, the third in three years. She'd recognized the vulnerability of the woman on the sofa and had reached out earlier to comfort her. There was a family from East Africa isolated by language but united in the universal worry over a loved one. I overheard a nurse sharing her problems with a co-worker but adding, “God is a good God. Every day I wake up, I thank him.”

And then there was my daughter, Megan, who arrived late in the afternoon bringing a bundle of sunshine. It was Aubrey’s first public outing. I snuggled my new granddaughter close and she fell asleep in my arms. I  felt deep, deep peace.

Now I revisit the questions: Is it good or bad to feel things acutely? Does repetition blunt or enhance the experience?

Here are my conclusions:  In some ways repetition allows us to feel less. Like tempered steel we gain the strength and capacity to endure. In some ways it allows us to feel more. Living with prolonged challenges allows us to recognize and feel the continual outpouring of love and comfort offered by God. Our challenges allow us to empathize and prompt us to share that comfort with others. And our pain helps us appreciate moments of pure joy.

The Apostle Paul explains it this way:
 
3 Blessed be God, even the Father of our Lord Jesus Christ, the Father of mercies, and the God of all comfort;

4 Who comforteth us in all our tribulation, that we may be able to comfort them which are in any trouble, by the comfort wherewith we ourselves are comforted of God.
                                                                           2 Corinthians 1: 3-4

Surgery Update

People started commenting after Harold's last brain surgery that they should just put in a zipper. That didn't happen today but the method was almost as good. Instead of opening a new bone flap in Harold's skull the surgeon was able to use a previous site by removing the titanium screws holding the patch together. The tumor was removed and the bone flap replaced. Pretty slick. Of course he had to be sewn back up but it was along the same scar line. Probably can’t count that as more inches of stitches.

The area of today’s surgery has been a hot spot so we don't know if this tumor was new growth or residual tissue from previous treatments. Either way our surgeon was able to remove all the visible tumor and will follow up with another gamma knife treatment in a few weeks to treat anything left at a microscopic level.

Surgery lasted about five hours. Harold came through just fine. He's in the  surgical critical care unit right now, a bit groggy but sitting up watching the Nuggets game. He should be moved to a regular room tomorrow. If all continues well he'll be home by Monday.

Surgery Today

10:45 am

The day has finally arrived. We are at the hospital going through the pre surgical work up. Harold's surgery is scheduled for 1:00 pm.

We appreciate your continued faith and prayers.