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.

Update - We're Home

Harold was released from the hospital today and is now “comfortably” resting at home. Okay, that might be a stretch. He’s not quite comfortable but it does feel good to be home.

Yesterday's release plans were delayed because of pain. Harold's got a mega headache. It's not so much the incision as the normal post operative swelling. Harold can't take steroids to reduce swelling but he can take medication to control the pain. With time his body will take care of the rest. Today has been better than yesterday and we're expecting tomorrow to be even better than today.

Update - ICU and Regular Room

Harold moved from post-op to the neurology intensive care unit around  4 p.m. yesterday. That’s the first I saw him. He looked great. His head was wrapped in gauze, both arms had IV ports, and his chest a checkerboard of monitor wires. I 'd expected that. His eyes had their usual twinkle, his mouth could not suppress a sheepish grin and when he talked his words came out smooth and clear. I’d been praying for that. He was fine.

Harold shared that he’d gone under anesthesia pondering the risks our surgeon had outlined, so the first thing he did upon waking was to raise his right arm and then his right leg just to make sure he still could.

The night in the ICU was a constant drone of beeps, hourly evaluations, and even a midnight CT scan. Everything turned out fine, but there was little chance for sleep. Another monitor went off and I grinned to myself, contrasting our “night out” with what we had originally planned.  Friday was to be the first day of a two week adventure, starting with a reunion in Houston then a flight to the Washington D.C. area to enjoy some U.S. history sites and spectacular fall foliage. As good as that sounded, I was happy to be right there in the ICU. Harold was safe and we had renewed reasons to hope.

This morning we learned Harold was the “healthiest” patient in the ICU; well at least according to our night nurse. He'd had no complications overnight and was wanting to get up and walk. "You even ate a roast beef sandwich!" she added, apparently building her case.  "I've rarely seen that happen right after surgery." We kind of looked at each other and shrugged. It hadn't seemed a big deal. Harold sipped the required broth then asked for a sandwich. He was hungry. The comments did provide a gentle reminder of how blessed we’ve been.

Harold has now graduated from the ICU and has been moved to a regular room. The gauze bandaging around his head has been removed as well as all IV's and wires. He has taken several walks and is now sitting up in a chair watching the BYU football game. There is a good chance we may be able to head home tomorrow.

Update - Waiting Room

11:30 a.m.      Harold is in surgery. It is expected to last 2-3 hours. During pre-op we got some clarification on the purpose and risks of today’s procedure. The tumor is being removed because it is causing irritation and swelling in the brain. It may or may not still have active cancer cells. Though there is extra fluid in the surrounding brain tissue, the doctor won’t actually see fluid or be able to drain it. Our bodies have the ability to do that once the source of irritation and swelling is removed.

Now the risks: In addition to the usual risks of surgery, this tumor is in a “delicate” location. The area of the brain that controls all sensation on Harold’s right side is directly in front of it. The area that controls speech is directly under it. The area that controls sight is directly behind it. Not really a margin for error. Fortunately, we have a truly great surgeon and feel comfortable in his care. 

2:30 p.m.       Harold is out of surgery and doing well. The surgeon reported that the tumor came out cleanly and appeared to be dead tissue, not active cancer. Harold’s initial responses seem normal.

Update - Gamma Knife #4

We are home from the gamma knife surgery. It went great. We came away with four pieces of good news:  
1.  Three new tumors were successfully treated. Bam!  
2.  The suspicious spot noted in last Wednesday’s MRI is shrinking away
      and no longer a concern. 
3.  The tumor causing the seizure is not active melanoma.

We didn't realize it, but this tumor was previously treated by gamma knife. Unfortunately after treatment it bled, causing it to look bigger. Today’s high resolution MRI confirmed that the tumor is actually shrinking. Unfortunately the blood around it caused irritation which triggered edema or a fluid buildup in the brain; and that’s what caused the seizure.

Under normal circumstances Harold would be given steroids to reduce the swelling and that tumor would be off the worry list, but Harold has been treated with immunotherapy. Steroids would slow down his heightened immune response, basically stopping further benefit from the treatment. It’s not a tough choice. When you have to decide between having brain surgery or cancelling out your best bet for a cure, brain surgery sounds pretty good.

4. That surgery, originally scheduled for October 18th, has been moved up to Friday, October 12^th. There was a cancellation, something that a week ago seemed highly unlikely, but it happened and Harold was given the spot. 

Harold is now "comfortably" settled in his recliner. He's got ice packs on his head, and a remote in his hand. Football anyone?

Short Circuit

The brain is an amazing electrical marvel easily ignored until  something goes wrong. Lately I've had reason to learn more.  For example:

Normally our body’s nerve cells communicate with each other through carefully controlled electric signals.¹ What happens if they are not carefully controlled? I found this analogy:

Visualize a room full of mouse traps. Instead of putting cheese in the mouse trap, we put a ping-pong ball on each trap and there's not a bit of space in this entire floor where I haven't put a mouse trap and a ping-pong ball.  

The analogy goes on to ask what would happen if you tossed a single ping-pong ball into that room. 

It's going to hit one, which will bounce, hit two, which will hit four, which will hit eight and before long, the entire room has got ping-pong balls flying in it. That's a little bit like what happens with a seizure.² 
 

And that’s what happened to Harold Friday night. 

It had been a good day. Harold played his usual early morning racquetball game then spent the rest of the day working on projects and helping a neighbor. Our family gathered that evening to share dinner and watch a football game. BYU was playing.  

Early in the first quarter the ping-pong balls started flying  and Harold was in trouble. If he hadn’t been the one holding the remote we might not have noticed. There were no outward signs at first. But when he fast forwarded through an important play we knew something was wrong. Harold offered no explanation. He couldn't. He had lost his ability to communicate. His speech was reduced to single halting words. 

Now it was our turn to jump into action. I called the hospital while Darren did a quick neurological evaluation. Harold’s motor skills seemed fine. We even tested his reflexes with a game of slap, a family tradition and one Harold's never lost. Despite impaired thinking that night, he still hasn't.

We spent the next five hours at the hospital. The diagnosis was a seizure, probably caused by the swelling around a tumor in his brain. We were relieved to rule out stroke or any new bleeding, but sobered by this new neurological development. 

It was after 2:30 a.m. when Harold was released from the hospital. Driving home I marveled at the events of the evening. Harold’s mind had been in chaos, ping pong balls bouncing out of control; but our family wasn't. We had felt a calm assurance as we mobilized to comfort and sustain each other. I feel that still.

Five days have passed and Harold has gradually regained his ability to communicate. It has been a humbling experience. Today he will have gamma knife surgery to remove two tumors. The high resolution MRI, a part of that procedure, will also give us a better look at the tumors scheduled for surgery October 18^th. 

¹ http://www.abta.org/understanding-brain-tumors/symptoms/seizures.html
² http://www.tbiguide.com/seizures.htm