Waiting

This week has been uneventful: no doctor visits, no tests or results, and no side effects.  Boring is wonderful. I realize we are in a state of waiting and I’ve had time to think about what that means.

What are we waiting for?

Well, medically we’re waiting to see if more brain tumors, too small to be seen in the last MRI, will appear in Harold’s next scan. It's scheduled for May 1^st.  We are waiting to see if immunotherapy will be an effective weapon against the melanoma in the rest of Harold's body. The first infusion was a week ago. The next in the series of four will be in two weeks, but we may not have indications the treatment is  working for some time. We are also waiting to see if immunotherapy will have dangerous side effects. If that happens it is usually after the second or third treatment; but so far, we’re good. 

How will the answers to the above questions effect the rest of our lives? We’re waiting to see.

We are waiting but we’re not suspended. That word brings all sorts of negative images: A principal’s office and a stern rebuke; an athlete stripped of his ability to play; or a body held motionless, waiting for the inevitable fall. That’s suspended. That’s not us.

We’re waiting, but we’re waiting on the Lord and that’s different. In the scriptures, the word wait means to hope, to anticipate, and to trust.¹ We do have hope, we anticipate good days to come, and we trust this challenge will be for our good. That said, our waiting is a form of action. We are filling our days with purposeful living.

We’re all in a state of waiting. Life is waiting. Did I pass the test? Did I get the deal? Did I get the job. When will I heal? Often the waiting and enduring are for reasons outside our control, yet I’ve come to understand we have a choice: Waiting can be a form of suspension or it can be a call to action. We choose action. We choose faith.

I love this promise in Isaiah:
 

But they that wait upon the Lord shall renew their strength; they shall mount up with wings as eagles; they shall run, and not be weary; and they shall walk, and not faint.      Isaiah 40:31

Harold has walked miles and miles this week, literally and figuratively. We continue to be amazed by his progress. He has greatly increased in strength and we’ve enjoyed an even greater measure of peace.  

¹“Waiting on the Lord: Thy Will Be Done” by Elder Robert D. Hales, Ensign Nov. 2011 pg 71. http://www.lds.org/general-conference/2011/10/waiting-upon-the-lord-thy-will-be-done?lang=eng

Update

I had my first immunotherapy treatment yesterday. The treatment is an infusion similar to chemotherapy. It was delivered by IV and took about 90 minutes. I have experienced no noticeable side effects yet. I can’t help wondering if my immune system has received the message to seek and destroy the enemy.  Whether I experience side effects or not has no bearing on the treatment's success in attacking the melanoma.  The next infusion is in three weeks, but it would still be too soon to know. Meanwhile I feel good.

Today I woke up, puttered in my workshop, and then took an hour walk. It was such a good day Sharon and I decided to spend the afternoon in the yard and garden. 

Growing Pains

We’ve lived in our house over 30 years. We bought it for the yard, simple as that. It has lots of lawn and an even bigger orchard and garden area. Our kids dug holes to China every spring only to fill them in again as we prepared to plant the garden. Now our grandchildren have inherited the tradition.

Carly and Elodie, not yet three, run outdoors to dig. Their tiny shovels barely move the earth, but they displace enough to cake their hair with the sandy soil and color their bodies brown. There’s a soapy shower in their future (that’s become the drill at grandma’s house); but they’re not worried. They lie back in the dirt and soak up the warmth of the sun.

Just starting to dig.

Today was a day of sweet memories, a day of family, and a respite from worry. We’ve had many, many such days of peace. We’ve also had days of anxiety and pain. You’d think choosing faith would exempt you from that, but it doesn’t. Sometimes it just hurts. It hurts to see loved ones in danger or pain. It hurts to acknowledge that dreams may change. It hurts. Sometimes it just hurts.

A friend shared a talk that brought her comfort. It did the same for me. These thoughts provided perspective and answered questions I hadn’t found a way to verbalize. It is entitled, “Trust in the Lord.”¹ Here are some excerpts:

“Just when all seems to be going right, challenges often come in multiple doses applied simultaneously.”

That's exactly how it felt. Bet you’ve felt that too.

“When those trials are not consequences of your disobedience, they are evidence that the Lord feels you are prepared to grow more. He therefore gives you experiences that stimulate growth, understanding, and compassion . . .

  

Hmm . . . should we take these challenges as a vote of confidence? If so, what next?

“To exercise faith is to trust that the Lord knows what He is doing with you and that He can accomplish it for your eternal good even though you cannot understand how He can possibly do it. . . 

Okay. Just trust.

When you pass through trials for His purposes, as you trust Him, exercise faith in Him, He will help you. That support will generally come step by step, a portion at a time. 

We have felt that support. Sometimes it is an inspired thought. Sometimes a feeling of peace. Often it is a message sent through the kind words or actions of others. However these portions come, we recognize our Savior’s hand.

   

To get you from where you are to where He wants you to be requires a lot of stretching, and that generally entails discomfort and pain . . . While you are passing through each phase, the pain and difficulty that comes from being enlarged will continue.” 

So feeling discomfort or pain is not a sign of weakness but is a part of the process. If that’s the case, we have permission to grieve and to groan while holding on to hope. We can see our trials for what they really are – a chance to strengthen our faith.  

I want to be carried through Harold's illness. I want to be cradled, to be protected from anxiety as I’d been during my own cancer fight. Much of the time we are. Then there are days of pain. You long to be a child out playing in the dirt,  unaware of the effort it takes to plant and to reap.You long to just bask in the warmth of the Son. Then you realize:

Perhaps it’s time to dig deeper. Perhaps it’s time to grow. 

 ¹“Trust in the Lord” by Elder Richard G. Scott. –  Ensign Nov. 1995.   
      http://www.lds.org/ensign/1995/11/trust-in-the-lord?lang=eng

Update

Harold has made a great recovery from the gamma knife treatment and the conventional brain surgery. He's had marked improvements in speech, clarity of thought, and energy level.  When his brain gets tired, he just takes a break. We are ready for next steps.

Harold will start immunotherapy this coming Friday. It is a systemic or whole body treatment for stage IV melanoma. It would be great if the tumors found in his body could be removed like the ones removed from his brain. Zap and they're gone. That works for the brain but not for the rest of his body. There we will fight at the cellular level. 

Immunotherapy works by taking the brakes off the body’s immune system. It allows the body to recognize melanoma as an enemy and relentlessly attack it. The downside is that this treatment could also allow your immune system to attack your digestive tract or other vital body systems; so Harold will be carefully monitored. Steroids will be administered to buffer the effect if necessary. 

Ipilimumab is the name of the immunotherapy drug. It is marketed under the name Yervoy. It is given intravenously similar to the way chemo is delivered. Each infusion will take about 90 minutes. Harold is scheduled to have four treatments given three weeks apart. 

Yervoy was approved by the FDA in March of last year. According to their announcement, "it is the first agent ever proven to improve survival in advanced melanoma."  That said, it helps about 20% of those trying it.

We’ve had a week to digest this information. We’ve had a week to ponder the implications. It is amazing to live in a time when the treatments offered Harold are even available. We are comfortable talking about next steps and are full of hope.

Who's Driving?

When Harold was diagnosed with brain tumors he lost his license to drive. It wasn’t physically taken away but his neurologist firmly told him there was a real danger he would have a seizure and might hurt himself or someone else. So I’ve been the driver these last two weeks. Harold’s graciously accepted my chauffeuring and we seem to make a good team.

Last night he needed to get something from the store and offered (with a grin) to go himself, if I didn't feel like going out. Well I didn’t feel like going out. It was snowing! And honestly Harold is doing so well . . . .

There is a marked improvement in his clarity of speech and thought. He looks and feels good. It would be easy to believe we are back to normal. But we’re not . . .  

I decided to drive. We'll wait for the official OK.

When you choose faith, you choose in effect to give up the driver’s seat.  And that’s not bad. Once you realize who’s driving, there’s a quiet, comforting peace.

Our Savior Jesus Christ took on all the grief and sorrow of the world. He marked the path and he leads the way. He’s the driver here. He has the power to heal if that’s His will. He has the power to comfort, strengthen, and bless if it’s not.

That sounds like a Sunday school lesson—the words we’re use to hearing especially this time of year. But these words are true. I feel them to my core. I’ve wrestled mightily to know their verity. They are true.

So we’ve embarked on the ride of our lives. It will take all of our strength and our faith. We are fighting to keep Harold around. But if not . . . we know who’s driving.

What Comes Next?

The joy of today’s gamma knife success was tempered by the realities of future challenges. We have received results from last Wednesday’s PET scan. Harold has quite a few more tumors spread throughout his body. That is often the case with melanoma; we were just hoping it wouldn’t be so for him. It is, and so we move on to next steps.

Traditional chemotherapy doesn’t work, but there is a new protocol called immunotherapy that has had success. Harold will be undergoing a series of four infusions, one given every three weeks. These infusions are designed to use the body’s own immune system to fight the melanoma systemically or throughout the body. The effect is to turn the immune system on full blast.      

We are grateful for the blessing of a successful surgery today and for the faith and prayers of so many friends and family.

Update - Gamma Knife

Gamma Knife Success.

Harold’s neurosurgeon was able to remove all the remaining tumors in Harold’s head. That included two additional lesions that were found during the high resolution scan prior to the procedure. Harold did great. The actual Gamma Knife part of the procedure lasted 2 hours and 10 minutes. We knew it was done when we heard Harold laughing and talking with the surgeon and radiology specialist.

Harold will have follow up brain scans every six weeks to check for the appearance of tumors that may be too small to detect at this time. They can also be treated with gamma knife.

It is absolutely amazing that this kind of treatment is possible. No blood, no stitches, and ten tumors gone – all while Harold was awake listening to an audio book.

Round Two

It’s 10:25 on Sunday night. The last of our family have left after a wonderful day spent together. This weekend was our Church’s 182 Annual General Conference. Broadcast from Salt Lake City to church buildings and homes around the world, it is our opportunity to see and hear our prophet and apostles give specific counsel for our day. It is also a unique family time as we listen together, snuggled comfortably in a favorite chair, sofa, or on pillows on the floor.   

Today started off with Harold’s traditional breakfast cake, scrambled eggs, hash browns, fruit and juice – a menu he’s been making for the occasion for the past thirty odd years. Megan, Christian, Darren and their families arrived in time to enjoy it with us.   It was a day of peace and rejuvenation as we prepared to start round two – Gamma Knife Surgery.

We report to Rocky Mountain Gamma Knife center tomorrow at 5:45 am. It is part of the University Hospital complex in the Anshutz Outpatient Pavilion. Despite the name, they won’t be cutting into Harold’s head with a scalpel. Instead they use highly focused radiation beams coming from many directions to converge on a tumor and obliterate it. Bam! ¹

There is a bit of preparation before that happens. First Harold will be fitted with a head frame. This is attached to his skull with pins. This frame prevents Harold from moving during the procedure. Next he is scanned in a MRI. With a special attachment to the head frame they are able to precisely measure Harold's head and locate each tumor. His neurosurgeon and a physicist will then study the scan and determine the plan of attack.

  

For the actual treatment Harold will lay down on the gamma knife couch and the head frame will be secured to an exact position. Harold will be awake for the procedure, which is painless. He was told he could bring an audio book or some favorite music. Hmm . . . what would you listen to during brain surgery?

¹If you want a more scientific explanation complete with pictures visit www.rmgk.com. Click the tab “GK explained.”