MRI Update

Written Wednesday, Sept 26th

Every six to eight weeks Harold has an MRI to check for new tumors in his brain. The last scan was July 30^th followed by a gamma knife surgery where six tumors were treated. Today he had another MRI. 

We’ve done this enough that it is fairly routine, but there’s still a sense of anticipation. I imagined how good it was going to feel to announce that Harold’s scan was clear. No new tumors. Our celebration would light up the sky. It was a great thought . . . but not reality today. No fireworks. Not even a little sparkler. 

Harold has three new tumors and one suspicious spot. That’s not so bad. We’ve been there before. The problem is that one of the new tumors caused a vessel to bleed, creating an area of inflammation around the tumor. Now too large for gamma knife treatment, the only option is surgical removal.

Harold is scheduled for gamma knife treatment of the two smaller tumors on October 4th and brain surgery for the third on October 18^th. 

I didn't have the heart to post this yesterday. We've now had time to think about it, sleep on it, and time to realize nothing has changed. We choose faith. We'll take the next steps and continue to live as if the miracle we pray for has already been granted.  . . and in many ways it has. 

Repurposed

What makes me happy? What makes me want to get out of bed in the morning?

I woke up asking myself those questions, then spent some lazy moments considering the answers. Well, I’m happy when I’m busy with something interesting, something worthwhile. I enjoy new challenges and the promise of accomplishment. I’m driven when I feel a strong sense of purpose. 

Then my mind wandered and I started thinking about a pile of wood . . . 

The redwood deck was a constant in our backyard. It was there when we bought the house and endured more than thirty years. Located away from the main patio, it rarely served as the site for barbecues but instead became the stage for our children’s adventures. It was a theater, a spaceship, a home base for night games, and most notoriously, a launching pad to the adjacent trampoline. Eventually our children outgrew those diversions and it became the home of potted geraniums and the hammock.

 Last summer we discovered the main supports had rotted through so we tore it down, planning to build a playground for our grandchildren instead. We saved many of the deck's redwood boards hoping they could be used in the project. Harold’s cancer diagnosis derailed that plan. Those boards now seemed a useless pile of wood, taking up space and reminding me of what we weren’t doing. 

Then Harold had an idea.We need a new grape arbor – something bigger and stronger than the decorative arch we’d had for years. It too was succumbing to stress and wear. What about that pile of wood? It appeared a dull moldy gray but underneath? Hmm. Harold ran a board through the planer and jointer in his workshop then proudly presented the result. The redwood, now stripped of its weathered guise, revealed itself. It was strong, its color renewed. It was appeared fresh and true and full of possibilities.

Harold built that arbor in the early days of spring, before the grape leaves opened and before there was any evidence he would be around to enjoy it. He burned his name on a small section of the wood hidden under the arch.  

It’s interesting how things turned out. The deck was a symbol of our children’s creativity and imagination, their love of life and play.  The arbor built from the same wood has become a symbol of rebirth. 

A simple piece of wood . . . 

Like the deck, we all weather challenges and get a bit gray and worn in the process. It’s exciting to realize we also have the opportunity to be renewed and repurposed. Who’s to say the new use isn’t as good, or even better than the last. I wonder if a redwood tree would choose to be a deck or an arbor. We've come to appreciate both. 

Harold and I are in the process of being repurposed. He has just retired from a very enjoyable career in investment banking. It was a major focus of his time and the source of great satisfaction. My mothering skills are not needed as they were when six young children played out back. Now what? We’re in the process of figuring that out but this much I know: We’re not going to lie around like a pile of weathered wood.  

Here is the immediate plan:

Finish the Fight. 

Harold is doing very well but fighting cancer is a process, not an event. He is closely monitored by his oncologist, with office visits and labs every three weeks. He’ll periodically have MRI’s and eventually another PET scan. Harold continues to feel great – except for a sprained ankle earned on the racquetball court.

Enjoy our Family

Those children who giggled and plotted in the back yard are now adults, finishing educational degrees, starting families, and launching careers. It is exciting to see their dreams becoming realities and to be close enough to be part of the action. 

Refocus Skills

The skills Harold developed in his 30 year finance career are now being refocused to assist our son Darren (Dr. Jones) open his own optometry practice. It’s been fun to observe Harold in his element, sharing those skills with his son. Who knows, I may pick up some new skills too. 

Serve

Harold says service is our rent payment for living. I guess he’s right. In any event, it wouldn’t hurt to give God a reason to keep him around. Yup, that’s one bill I’m happy to pay. 

Feeling His Love

There is a tender melody sung by primary age children that describes different ways we can feel our Savior’s love. We feel it when we look at the beautiful world around us. We feel it when we kneel to pray. We feel it as we recognize blessings. That song had drifted in and out of my mind for a week when I finally stopped and asked myself, “How do I feel my Savior’s love?” 
 

Immediately I thought of the day we received the news that Harold’s immune system was fighting back, attacking the cancer in his body.  It’s logical to feel loved when life is good and fervent prayers are answered. 

But my thoughts also turned to the days and hours before the good news. 

The time of waiting was an intense mixture of wanting/not wanting the doctor’s report.  The appointed day would never come, and then it did. We went about our morning routine with a studied nonchalance, calmly making preparations to leave, discussing mundane household concerns and stealing sidelong glances at the clock; but in the car the undercurrent of tension broke to the surface. By the time we reached the freeway I took a deep breath and asked, “Will it make any difference what we find out today?”

There was a moment of silence as Harold pondered the question, then he replied, “No, it will not.”  I agreed.

Harold understood what I was really asking: Will bad news diminish our faith in the Savior Jesus Christ or undermine our understanding of Heavenly Father’s plan for us?  Will bad news destroy the peace we’ve felt and will continue to need if we have reason to grieve? No it will not! We choose faith.  

    

With that, the air was cleared. Instead of tension there was a feeling of lightness, of optimism. We were going to be fine no matter what.  

And that’s when I truly felt my Savior’s love.  

I feel my Savior’s love in all the world around me.
His Spirit warms my soul through everything I see.
He knows I will follow him, give all my life to him.
I feel my Savior’s love, the love he freely gives me.¹

I’ve come to understand that our Savior’s love can sometimes be felt more powerfully, more intimately, when things are not going well, when all we can do is rely on His love for comfort and strength, whether or not it is His will to remove our burdens. 

That’s my experience. I’ve taken some time deciding whether to post it, yet in gratitude how could I not? Our Savior’s love is real. He wants us to feel it. He offers this invitation and promise:

Come unto me, all ye that labour and are heavy laden, and I will give you rest. Take my yoke upon you, and learn of me; for I am meek and lowly in heart: and ye shall find rest unto your souls. For my yoke is easy, and my burden is light. Matthew 11:28–30

Harold and I testify, along with the primary children and the multitudes who've gone before, that we feel our Savior's love .  .  .  and give thanks. 

¹ “I Feel My Savior’s Love” by K. Newell Dayley in Children’s Songbook, page 74.

You can hear this beautiful song by following the link below. Select “recorded music” then “words and music” then press the play button. Warning: This song has been known to stick in your head.

http://www.lds.org/churchmusic/detailmusicPlayer/index.html?searchlanguage=1&searchcollection=2&searchseqstart=74&searchsubseqstart=%20&searchseqend=74&searchsubseqend=ZZZ

It's Working!

“It’s working!” is the message of a simple text hastily sent to our children as we left the cancer center today. Harold gripped my hand and we exchanged a look much more eloquent. Within moments we received the first response. “Of course it is.”

That expression of confidence and faith brought a tear. The next response, “What’s working?” brought a laugh.  This news, so personally pivotal, is after all just a moment in the myriad ups and downs of life. Give it some context.

Well, here’s what’s working: Immunotherapy! 

The PET scan clearly shows the proof. Some of the tumors are completely gone. Others are still under attack, their bright blips fading and shrinking. The immunotherapy effect is expected to continue for some time. Harold will be closely monitored. This was the first good news. After the usual physical exam our oncologist added these additional thoughts. 

“Yes, the medical treatments are working, but there is much more going on with this man,” he said pointing to Harold. 

“What do you mean,” I questioned. 

“If you could follow me around for a few days you would appreciate the difference," he said tapping Harold on the chest. “It’s not quantifiable, I can’t reproduce it and give it to other patients, but what he has is more powerful than the medication I can offer.”

He then went on to speak of positive attitude, optimism, determination, peace . . . and something more. 

We know that "something more" is the blessing of peace and healing granted by a loving Heavenly Father. We also gratefully acknowledge the continued faith and prayers of family, friends, and associates. We humbly thank you.

Update - Gamma Knife #3

This was our third time through the drill. I could repost the May 10^th update and it would be accurate. Harold is now home resting: ice packs on his head, feet up, watching the Olympics.

Six tumors were treated¹, but here is the good news: these were not all new tumors. 

The first two we knew about. They were confirmed in the June 27^th MRI. The next two the surgical team knew about as suspicious spots but couldn’t verify until today. The last two – well nobody knew about them, but they showed up and have been treated. 

I asked if the team was watching any other suspicious spots. Nope. Everything else looks really clean.

We continue to learn more about this cancer:

Harold and I had assumed the tumors in his brain had come directly from the melanoma he’d had removed three years ago. Turns out it doesn’t exactly work that way. The melanoma cells that escaped his initial treatment spread through his blood stream to other parts of his body then metastasized to his brain. Maybe that’s a fine point but it also explains why he may continue to get new tumors in his brain until the systemic cancer is controlled. Wednesday’s PET scan will give first indications on how we’re progressing on that front.

Now here is some interesting news:

The gamma knife team is especially interested in Harold because his body is not responding in the usual way; and that’s a good thing. When gamma knife surgery zaps a tumor, it kills it. The cancer is deactivated and cannot spread or grow; but the mass is usually still there.  The doctors are especially excited about Harold’s case because not only are the previous tumors deactivated – they are gone.  

¹Total brain tumor count: 26

Tight Rope

It’s nearly four months since Harold’s diagnosis. The days speed by, but it’s also been a time of waiting. We're waiting on an answer to the one big question. 

We’ve been granted a large measure of peace and that is a huge blessing. But that peace doesn’t take away the question or the anticipation of the answer; and as the time passes that anticipation grows. There is a tension. The stress is subtle. It’s like a rope being pulled almost imperceptively tighter and tighter.  My mind may not have recognized the changes, but my body certainly has. That realization came while massaging a stiff neck I'd been nursing for days. I shared my conclusion with Harold who agreed. The undercurrent of tension is real. 

Is that a bad thing? We decided it wasn't. If we are exercising faith there will be a sense of anticipation, a hope for things not seen. 

The feeling was heightened by the anticipation of today’s doctor appointment. We knew his oncologist would not have new information. Harold was scheduled for a routine checkup, no scans or tests. Still, any contact with an information source is a step closer to the unanswered question: Will Harold live? 

We waited in the exam room, the question silent in the air. Harold’s doctor entered accompanied by a medical student. After the introductions he started the exam. The question of any new aches or pains was answered by Harold’s confession of a sore muscle, pulled learning to wakeboard last week.

“My best patient,” exclaimed the doctor with a twinkle in his eye, “and I feel like I need to drive him around.” I puzzled over his statement. Was he implying Harold was a model patient or that he needed to be protected from doing something stupid. I couldn't ask for clarification because those two were already exchanging stories of wind surfing and other water misadventures.

They also laid the big question on the table with all its sober realities. The fact is, we don’t know. The final answer will come from the Lord in His own due time. Meanwhile we will have some indication of the effectiveness of the immunotherapy treatments in the next couple weeks:

Harold is scheduled for a Gamma knife surgery on July 30^th. This procedure will remove the two small tumors that were confirmed in the last MRI and indicate if any new ones have grown.   

Harold is scheduled for a PET scan on August 1^st. This will indicate the status of the tumors in the rest of his body.

So what do you do with a tight rope? Recognize it, have the faith it will hold you up . . .  and dance on it.

MRI Update

Harold had a MRI yesterday as a follow-up to his May 10^th gamma knife surgery. The day seemed long as we anticipated the results. Would he be free of new tumors? Would that provide further evidence the immunotherapy treatments are working? How would we feel if there were more tumors? What would that indicate? Would we have reason to celebrate or to brace ourselves for next steps?

  

The answer is somewhere in the middle.

Two very small tumors were found. That’s the bad news. The good news is they are not new (sound familiar). They were tiny specks on the last MRI but were too small to verify they were tumors and not blood vessels. The rest of his brain looks great!

Because the tumors are so small, we have decided to wait a month to do the next gamma knife surgery. This will allow time for any others to show up. Harold will also have a PET scan in the next month which will indicate if the immunotherapy is working on the tumors in the rest of his body.

  

So we’re not celebrating today, but we’re not unduly discouraged either. As much as we wanted a clean scan, new tumors are expected in cases like Harold’s. We've been praying for a miracle and will continue to do so. We had hoped to see evidence of it yesterday . . . 

And perhaps we did. Isn’t it miraculous that a tumor only 2–3 mm in size can be seen and even treated without actually opening up the brain?  That is a modern miracle. Our family has been blessed by many miracles wrought by medicine and by faith. We recognize our Savior's hand in both. That knowledge blesses us with perhaps the greatest miracle of all: peace.