Merry Christmas

Christmas Day had about gotten away when I realized I wanted a family picture. It was cold, the grandchildren were napping, and no one was excited about heading outdoors. Harold shoveled a path through the new snow and we dashed out for this photo moment– a tribute to that day last March when we stood together and chose to rely on our Savior to guide us through Harold's cancer battle. That faith has been rewarded. Harold is still here . . . and we still choose faith. 

 

                      

Update

Harold had an MRI today to check for new tumors. This was the first scan since his October 12^th brain surgery and since he started chemotherapy. Drum roll please . . . 

 For the very first time we are able to announce
No New Brain Tumors!

I don’t know if grinning ear to ear and throwing high fives conveyed the proper “cautiously hopeful” doctor’s office demeanor. Bouncing down the hallway and announcing it to total strangers in the elevator probably didn’t either; but hey, it’s the Christmas season and we just got the best gift ever!

The Interview

“So how would you feel about writing the next blog update?” I asked.

Harold responded with a cautious agreement then followed with this question, “What should I say?

“Whatever you are thinking or feeling,” I replied. “People just need to hear your voice.” 

That discussion turned into an informal interview. 

Sharon:  Harold, how are you feeling?
Harold:  I feel great. I’m in a good place.
Sharon:  What does that mean?
Harold:  It means I really have faith that I’m going to be taken care of.
Sharon:  What does that faith do for you?
Harold:  I don’t worry all the time. Recently I realized I can go most of a day without remembering I have cancer.  I take my pills at the appointed times and forget about the rest.
Sharon: You feel that good?
Harold: I really do.

In the days since that discussion I’ve realized we often “interview” those we care about. Our questions are expressions of interest and concern. Sometimes it is hard to start those conversations for fear of offending or causing more pain. In our experience that doesn’t happen. We welcome your questions as well as your love and prayers.

  

And then there are doctors. 

They jump right to the point. Today was Harold’s first office visit since starting chemotherapy. His doctor hit him with a barrage of questions designed to determine his tolerance for the chemo pills and to look for signs his condition was getting worse.  After answering “no” to all of the questions, Harold humbly said, “I’m sorry Doctor. I’m really trying to find some pain, but I don’t have any.” There was a pause, and then they both burst out laughing.

Harold went on to explain that he had gotten up early to go on a two mile run then had spent the rest of the morning doing carpentry work. “It’s that Jones factor,” his doctor exclaimed. I really wish I could bottle it. It’s working better than the immunotherapy did.”

And today’s lab results indicated that something really is working. Harold’s tumor markers that spiked so dramatically at diagnosis, then came down during immunotherapy only to start back up again, have now dropped into the normal range. The ups and downs of our eight month cancer battle have taught us to be cautious with good news; but any way you look at it, today's lab results are encouraging.

“So Harold, how are you feeling?”

This is Harold writing:

I really do feel great.  There are moments that remind me that I have had brain surgery but not very many. 

I would like to thank my Father in Heaven for his tender mercy that is shown to all who come unto him.  Sharon has been such a support and loving companion.  She has written most of the blog and her spirit of optimism and talent of expression comes though with great clarity.  My family has been extraordinarily loving and have given of their time and talents and service to me, both when I have asked for their help and when I have not.   

I am thankful for all the friends and associates that have given a kind word, a thoughtful card, a prayer where I merit mention in their petitions to the Almighty along with their own challenges.  I thank all who have taken an interest in my welfare and that of my family.  May you all be blessed and may we all be granted peace this Thanksgiving season as we recognize the blessings we’ve already received. 

On the Road

Harold took his first chemotherapy pill last Tuesday night. We had hoped to start the treatment a few days earlier but communication issues with the insurance company and then the severe weather on the east coast delayed the medication’s arrival. Starting chemotherapy a few days late probably won’t affect the overall treatment but it created some extra worry. You see, we were leaving town Wednesday morning and had been warned that the first couple days on chemo could be rough. Harold was taking his first dose Tuesday night.

That night was rough but we decided to risk the trip anyway. Harold was queasy the first couple of hours then started feeling good and has felt great every since. We were able to enjoy an uneventful drive to Utah — all to see a show.

Not just any show. This was our daughter, Rebecca’s art show. She is studying illustration at Brigham Young University and had the opportunity to showcase some of her work in the Harris Fine Arts Center there. It was wonderful to see her beautiful portraits and to be a part of the opening reception for the event. No, we were not going to let a little chemo pill keep us from going, and gratefully it didn’t.

It is amazing to realize how much we’ve been carried through each bump in the road. We may get discouraging news, and then we’re taken care of in the best possible way.

A friend sent me an email last week. It contained a single verse of scripture. I read it and wept because I knew, in a way I’ve never known before, that it is true.

Peace I leave with you, my peace I give unto you: not as the world giveth, give I unto you. Let not your heart be troubled, neither let it be afraid.     John 14:27

The Formula

It’s easy to write when the news is good. And then sometimes it’s not. 

Harold had a PET scan last Tuesday to check the status of tumors in the rest of his body. We got the results on Friday. The immunotherapy, which appeared to be working earlier, is not doing enough now. While the cancer has not spread to any major organs, there are some small tumors that have not responded to treatment. In addition, immunotherapy has not prevented new tumors from developing in Harold’s brain. Gamma knife took care of the last ones, so he's clear right now, but we need a systemic treatment. Thankfully, there is a plan B. 

Harold is starting a six week round of chemotherapy administered in pill form. The pill form of treatment is more effective on brain tumors than traditional chemotherapy infusion treatments. If it works it will also attack the other tumors in Harold’s body. Generally well tolerated, Harold might not even loose his hair. 

It has taken me a while to wrap my mind around this latest setback. It is such a sharp contrast to the joy we’ve felt over the past week as Harold has emerged from his post brain surgery fog. He really does feel good and is able to think and speak normally. His strength has returned as well as the sparkle in his eye. We’ve enjoyed some brisk two mile walks, some leisurely talks, and time with family and friends.  

Throughout Harold’s cancer challenge there has been one constant in our lives. A strong sense of peace. This latest news interrupted that flow but didn’t break it. Harold was the first to rebound. I had to process a bit longer. Sometimes you rely on the slightest hope offered by doctors. They did tell of one patient whose case was similar to Harold’s who used this chemo treatment and has survived over ten years. But statistically, it’s a rarity.

Sometimes you have to dig a little deeper, work a little harder, grieve a bit, then breathe. I’ve learned there is a well of love and comfort available – an outpouring from our Savior that lets you know he’s still there. We are in capable hands. We will be OK.

Back when I taught Sunday School I’d often put this formula on the board:  L+ L + W = P. It’s a true formula found in the scriptures. I’ve tested it and it works.

Learn of me and listen to my words. Walk in the meekness of my spirit and you shall have peace in me.¹ 

There is a cost in effort, but the value of peace? Priceless.

 

¹Doctrine and Covenants 19:23

Still Superman

A week post surgery and the fog is lifting . . . 

Immediately after surgery Harold was sharp – his ability to reason and speak restored. We rejoiced. The tumor had been removed with no permanent side effects and immediate positive results.

But by day two things were subtly changing. The very process of doing surgery to remove a source of inflammation (the tumor) caused additional inflammation. You can't open a four inch incision in the skull, no matter how delicately, without the body's defense system rushing in. It's a natural response anytime we get cut or injured. In the brain that swelling is trapped within the skull, potentially putting pressure on areas that control one's ability to talk, reason, or even move. By day three Harold was overwhelmed with pain and lost in a cognitive fog.

The doctors were not surprised by the swelling, especially since Harold can't take steroids to reduce it. We just needed to wait it out. Harold was released from the hospital with drugs to manage pain and to prevent seizures. I was charged with watching his progress and reporting concerns.

The days passed with little improvement. Reason told me Harold was fine. There was a logical explanation for his unsteady walk and broken speech. But how long was it fine. One day? Two days? Five days? I watched intently.

It was hard to watch Harold cover his face in frustration when he couldn't fight through the stupor of thought. It was hard to see him grimace in pain or waver precariously as he stood up to walk. It was hard to see our superman weak and vulnerable. Finally on Thursday I reported my concerns and learned about what I couldn’t see:

Harold is being hammered by a number of forces and any one of them is enough to put most of us under. He’s just undergone brain surgery. He had inflammation before the surgery and now has additional post operative swelling, yet I was told he is doing as well as many who are on steroids. His anti seizure medication is contributing to the confusion and unsteadiness. Even his pain medication could add to the fog. No, they were not worried. Give him a few days.  

It was reassuring to get some perspective. Though it didn't look like it, Harold was actually doing great.

Thursday night Darren and Preston gave their father a blessing and he immediately started feeling better. The next morning he greeted me with a joke and a big smile. Today he started talking in paragraphs. Harold still tires easily and often has to give his "overheated" brain a rest but he is making real progress and as far as I can tell, he's still superman.