Gamma Knife Approved

7:45 a.m.
Just got word that the Gamma Knife procedure has been approved by our insurance company! This is a huge relief. We  are grateful for the work, faith and prayers that have allowed this appeal to go through for approval. 

Update

Harold goes in tomorrow afternoon for a Positron Emission Tomography (PET) scan. The purpose of this scan is to see if cancer has spread to any other part of his body. I’ve had this procedure before and it's amazing. I felt like I was in a lab scene in some kind of science fiction movie. Harold will receive an intravenous injection of a radioactive glucose. Following the injection he will rest quietly for about an hour while the glucose travels through his body. After that he will lie on a table that will slowly pass through a scanner.  My doctor explained that cancer cells are pigs. They just gobble up the glucose tracer creating hot spots that show up on the scan.

    

I vote for a no show, zero, none.  But if not . . .

We expect to get the results on Monday.

P.S. We walked 40 minutes today.

Home

We woke up at 8:00 a.m. this morning. It was a sharp contrast to our days in the hospital or to Harold’s longtime 5:15 morning alarm. Even better, we were home in our own bed. Life is good.

  

In some ways the last ten days have been like a dream. So many kindnesses, so much support, so much love. There have been harsh realities that startle us and there have been continued confirmations that we are in our Heavenly Father’s care. Did all this really happen? Is it real?

  

We were released from University hospital Sunday by 1:00 pm. As we approached the door I thought I recognized the woman coming in. This woman was pushing a baby stroller. Could it be? Our eyes met and she immediately opened her arms to give me a hug. Yes, here was my fellow nomad – the woman whose husband had undergone the same surgery as Harold. She was amazed and encouraged by how good Harold looked. “Give it a day,” we encouraged, “your husband will feel better too.”  
No, this wasn’t a dream. She and her baby were real.

  

Harold does look amazing. You don’t see his scar unless you are tall enough to look down on his head. Then you will notice a graceful superman “s”. The incision is held together with staples reminding me of railroad tracks. (Harold won’t let me post a picture, but it’s cool.)

  

The most pronounced side effect is a physical and mental tiredness which we are told will gradually decrease over the next month.  That said, we took a 30 minute walk through the neighborhood today and had some pretty lively debates.

A good friend once explained that Faith is simply taking the next step. When I heard it I knew it was true. 

 

 

March 25, 2012

Update

Harold is much much better today. There is no residual imparement to his right side. He was up the whole morning, talking clearly and moving well. We will go home tomorrow. The next stage of the plan is to get a PET scan on Wednesday to see if the cancer has spread anywhere else. We have rescheduled the Gamma knife surgery for a week from Monday. Still some things to work out on that. 

Again, thank you all for your continued faith and prayers. We recognize that our current challenge is not unique. It is a time of trial for everyone. But it is also a time of joy. Sometimes trials make the joys more sweet - like the joy of family and friends who sustain us by their love and faith. We are humbled. 

Nomads

There is a hospital culture separating people into three classes: staff, patients, loved ones. It’s easy to identify staff with their uniforms and badges. Patients, well they have their uniforms too and are usually found in beds. But loved ones? No uniform apparel but uniform habits. During the first hours they may congregate in waiting rooms and cafeterias. Later they are dispersed to floors where they begin a semi nomadic existence.
I found myself there yesterday morning. I’d slept in a chair in the ICU then wandered down the hall to find a place to freshen up. For the record, University Hospital has lovely public restrooms. Splashing my face awake, I was greeted by a young woman doing the same. We recognized each other as “loved ones.” Her husband was still in surgery, mine just recovering; both men undergoing surgery for brain tumors in the left frontal lobe. We exchange details. When she heard that Harold had eight more she exclaimed, “How are you standing here?”

My mind raced back to the previous Friday – that day filled with diagnosis, and panic, and a wrestling with fear. Then forward to Saturday and the decision to choose faith and the blessing of calmness and peace. I shared that journey. Our eyes met. She understood. We were two nomads starting the day anchored by faith.

 Just then the door to the stall behind us opened and a tall redheaded woman emerged. She put her hands on her hips and firmly stated, “I’m here because my husband has terminal cancer. Don’t you ever give up hope! You run that race. There will be miracles every day.” Then she turned to me and continued, “What you just shared gave this other woman peace. You got to keep talking.” She embraced us then offered, “I’m praying for you both,” and left.
  
A singular experience. We did stay and talk a bit longer. This young woman has a seven month old baby. Her parents were in the waiting room holding him while she rushed in here to freshen up and put on make-up. I told her I’d held my grandson while waiting the evening before. She expressed the opinion that babies should be an essential element of surgical waiting rooms, as her son was giving a happy diversion to many people. I smiled – Exactly!

Update

We are out of the ICU and have moved to the 7th floor neurology ward. Hope to be home on Sunday.

My Name Is

Discovered why the ICU nurse said Harold had retained his sense of humor last night  . . .

When you are in the ICU post brain surgery, they monitor you regularly to make sure your brain is working. There is a script of questions: What’s your name? Where are you? Do you know what day it is? Can you lift both arms? Stick out your tongue.  Can you push, can you pull? Look at me.

Sounds too simple to reveal neurological problems, but each test confirms the brain is working. So far we’re pretty sure Harold’s still got one. By the time Harold arrived in the ICU he’d been through the drill a few times, so when his nurse started the questioning with “What’s your name?” he replied, “My name is Inigo Montoya.” ¹ Luckily she got the reference, harrumphed, and asked the question again.

Come on Harold – This is serious. We’re all pulling for you. I think you’ve been unduly influenced by a recent gift: F  in Exams – The Very Best Totally Wrong Test Answers by Richard Benson.

(Thanks Walt)

Actually Harold had been acing everything until he tried to stand up for the first time this afternoon. He quickly became dizzy and sat down. Then he discovered his right arm had a spastic motion. We later realized he also leaned right as he walked. The Docs took this seriously but also believed it was a result of swelling at the surgical site. Not unexpected as his surgery was in the left frontal lobe. Swelling just behind that would affect motion on his right side. That turned out to be true. Harold is much better tonight. In the peak of our worry he quipped: Westley: Why won’t my arms move? Fezzik: You’ve been mostly-dead all day.²

¹ The Princess Bride (1987). Inigo Montoya: Hello. My name is Inigo Montoya. You killed my father. Prepare to die. As referenced in The Jones Family Collection of Cultural Idioms’ and Oft Quoted Movie Lines, Competition Edition, Pg 34.

² Same as above, pg 38.

Waiting Rooms

It’s just after 9 pm. I’m here in the ICU with Harold. He is sleeping.

Surgery went very well. Harold was awake and talking to us within a couple of hours of recovery. The nurse noted that he hadn’t lost his sense of humor. Yup – that’s Harold.

Megan, Darren, Ashlee, and baby Brooks spent the day with me in the waiting room. It was nice to snuggle a baby as a kind of security blanket against the raw emotions of families awaiting the surgeon’s “everything went well” report. Of course that is not always the result. There were fifty surgeries in this part of the hospital today. We heard one woman break down in anguish.  Every heart wrenched at the sound.  

Later, Brooks cried. An older woman, worried about her own son, gravitated toward us. She told Ashlee stories about her children. Other strangers came by, cooing and smiling. I started hearing people talk about babies and grandkids . . . and love. I think babies are a great idea for surgical waiting rooms.

We are grateful for the blessing of a successful surgery today and for the continued blessing of peace.

Surgery Update

Harold had his surgery this afternoon. The two large tumors were removed from the top of his brain. Harold is doing well. We have been able to talk to him and he has been as positive as ever. We are encouraged by today's results. Two down eight to go!

The Battle Begins

Tomorrow is the official launch of our cancer battle. Harold will be having surgery around noon to remove two large tumors located on the top front of his head. The tumors caused some swelling in the brain which is the cause of the symptoms Harold noticed. Removing the tumors should relieve these problems. The surgery is expected to last about four hours. Harold will spend the night in intensive care, then move to a regular room sometime Friday. He is expected to be in the hospital three days. We're still waiting to hear back from the insurance company about the surgery for his other tumors.  

This isn't our family’s first battle with cancer. Like veteran soldiers we gear up to fight again.  We are humbled and greatly strengthened by your faith, your love, and the power of your prayers.

Ups and Downs

Yesterday afternoon we saw Harold’s oncologist who had some encouraging news about new medical treatments for these tumors. We left the appointment a little giddy. Maybe science had something to add to our faith. It was late afternoon as we headed downtown to pick up some things at Harold’s office. Then we got a phone call from the neurosurgeon’s office. Our insurance company was delaying approval for the gamma knife surgery. Tuesday’s procedure was cancelled. I gripped the steering wheel and groaned in frustration. We were so psyched to get started. Navigating traffic, I tried to think logically. Wait a minute. We choose faith.  This will work out.

First thing this morning I called our surgeon’s office back. I learned that the neurosurgeon would be out of the office for five hours. Upon his return he planned to contact the insurance company and advocate for Harold. And then another tender mercy: The surgeon returned two hour before expected. Just then the insurance company called. They had the conversation. He made his case for Harold. We are now waiting to see if they will give approval. Guess that’s something we can all pray for now. 

We are still on schedule for Thursday’s surgery at 11:30 am.

Diagnosis

Last Friday Harold got up, taught seminary and then headed to the hospital to have an MRI. For the last several weeks he’d experienced difficulty with speech. Unexpectedly he would have trouble finding words. Not the usual “senior moments” but an overwhelming feeling that no words could come. He saw a neurologist who ordered an MRI for Friday morning. 

We wondered how long we would wait for results. They were immediate. Ten tumors were found of varying sizes. Some were putting pressure on the speech center of the brain. Since Harold had undergone surgery to remove a melanoma on his forehead three years previous, the doctors were fairly certain these tumors were also melanoma. The dreaded words, “I’m sorry” conveyed the seriousness of the diagnosis. 

Harold went to work to share the news with his colleagues at Coughlin & Company where he has worked for the past 30 years. Their response was immediate support and concern for his well being.  I was touched when they all escorted Harold home.  

By late afternoon I started getting calls from the hospital. Our neurosurgeon had a plan and they were ready to start. Two surgeries were scheduled. First a gamma knife procedure on Tuesday to remove the smaller tumors followed by neurosurgery on Thursday to remove the larger tumors. We were very grateful for the quick response by the medical teams involved. 

In just a few hours our lives had changed and were launched in a new direction. There was little time to discuss the subtleties of sharing the news with family and friends. By evening our children were told and a dear friend helped arrange for flights home the next day. Logistics prevented us from keeping the news quiet and then we realized we would welcome the faith and prayers of our family and friends. 

We were soon overwhelmed by the outpouring of love and concern. Many, many of you have joined us in fasting and prayer for Harold. We express our gratitude for your faith and prayers. Our family has already been blessed. Saturday evening our sons were able to give Harold a beautiful priesthood blessing. Then all our children asked him to give them father’s blessings. That’s about as close to heaven as I can imagine. 

We know Harold’s diagnosis is very grave. We also know there may yet be a work for Harold to do here. We Choose Faith. Faith in our Savior, Jesus Christ. Faith in our Heavenly Father’s plan, and faith that He knows our needs and fulfills his promises in His own way. So perhaps we need a miracle . . . but if not, the Lord's will be done. 

Harold Jones Family March 18, 2012