It's Still Life

When our family was young we took road trips, and developed traditions that kept things interesting along the way: The Alphabet Game, I Spy, harmonizing with the Beach Boys or belting our show tunes . . . and sometimes simply holding our breath.  I know that last one sounds kind of strange, but it worked. As we approached a tunnel, Harold would challenge the kids to take a big breath and then hold it until we got through. Some tunnels were easy. Others, like the Eisenhower Tunnel, were no-hopers. Then we would just hold on as long as possible. Could we make until we saw the light at the end?

When you gear up for a challenge it’s kind of like that. Some you can ride out in one breath. Others last longer; and whether you can see the end or not, you have to keep breathing. You have to stay engaged in the business of living. You’re right, Valerie. It’s still life, despite the recent changes.¹

Harold is enjoying his woodworking shop, just completing a redwood arbor for the back yard. I’m putting in the flowers. He’s tutoring me as I take a more active role in managing our financial interests. I’m tutoring him as he has time for more domestic chores.

 

We’ve planted the garden and it’s beginning to grow. The sprouts, their necks bowed, break through the earth and open up to reveal first leaves.  And, as expected, the weeds have come up too.

We still laugh when our kids share stories of hide and seek. We still cheer when the Rockies win.  We still sneak ice cream in the evenings. We still feel guilty enough to exercise the next day.

We still grieve when life’s challenges bring hardship to others and pray for their healing and peace. We still petition the Lord for Harold’s health and recognize we are being greatly blessed. At the same time we say "thy will be done" . . . and mean it. 

We are humbled by associates, friends, and family who pray in Harold's behalf. We are grateful for the sustaining power of their faith. Harold’s still here. He's made it two months since diagnosis and is feeling well. 

Harold’s next infusion is Friday, May 25^th. We’ll see what happens next. Meanwhile, it’s still life – and life is very, very good. 


P.S. Harold got through last week's gamma knife surgery with no swelling. The ice packs worked.

¹See comment after May 7^th “Still Life” post. I hadn’t realized the double meaning when I wrote that post. So thanks Valerie, you inspired me once again.    

Update

We’re just home from the hospital. The Gamma Knife Surgery went well. Harold is now resting with two ice packs on his head – one in front and one in back. He is determined to be more aggressive in preventing the swelling that dropped to his eyes lids last time, swelling them nearly shut. Let you know in a couple days if that works.¹

 

Six tumors were treated this time, but here is the good news: These were not new tumors.²

 

Here is how we know. The neurosurgeon superimposed the highly detailed MIR from Harold’s last treatment over the one they took today and could see those spots were there before. They just weren’t big enough to verify they were melanoma. They could have been blood vessels.  

The surgeon indicated that everything looks good. Harold will have a follow up MRI in six to eight weeks.  

¹ The gamma knife procedure itself did not cause the swelling but the attachment of the head frame to his skull and the injection of numbing medication.
 

²For those keeping track, this brings the brain tumor total to 20. Our family is a bit competitive but this is ridiculous. You win, Harold. Stop!

Update

Friday was Harold’s second infusion treatment and he is feeling great. 

Before Friday’s treatment Harold had lab work and a checkup to make sure he was well enough for the infusion. When his oncologist asked how he was feeling and Harold replied that he’d played racquetball just before coming in, his oncologist laughed and asked about the game. Harold  was cleared for infusion number two.

We learned why body scans are delayed until later in the immunotherapy treatment process. Early on they may be inaccurate and convey false bad news. This treatment works by allowing the body to recognize melanoma tumors as an enemy; and when that happens, the tissue around the tumors becomes inflamed. If Harold is scanned now the tumors may appear larger, when in fact they are just under attack, surrounded by his body’s defense forces.  Later scans may reveal a whole different story.

Sometimes we dread those visits to the doctor or the hospital. Not because the treatments are painful, or the people unkind. We have a great medical team working on our behalf. We dread those visits because we are forced to bump up against the statistical reality of Harold’s diagnosis. We ask the questions and are given honest answers. Then we are left to digest the information and rally our courage. It wasn't as hard on Friday. We felt encouraged.

Our next hospital visit will be Thursday, May 10^th when Harold will undergo another Gamma Knife surgery to remove the new brain tumors revealed in last week’s MRI.  The procedure should be the same as before. Harold just needs to decide what book to listen to.

Still Life

When did my eyes turn into the lenses, my lids into shutters? I can’t recall the moment, but it’s happened. Seems I'm constantly capturing images to tuck away in memory – a look, a hug, a smile. Maybe it's the way the light falls on the garden or plays through my grand-kid's hair. Maybe it's a scene with our family laughing, or kneeling together in prayer.  Whatever the setting, it's happened. I'm a camera . . . and I'm glad.

I mentioned this to Harold. He understood. We’ve recorded some beautiful scenes lately. Mine include dinner at an Italian restaurant with three of Harold’s siblings.  I recorded laughter as they dipped their bread in oil and vinegar, and indulged in stories of childhood pranks.  The warmth of the scene contrasted with the brooding sky and fluttering leaves playing against the window behind us.

Harold’s include golfing with two of his brothers who’d traveled some distance to visit. Not regular golfers, Harold confided that a snapshot wouldn’t quite hold that memory. I recorded the tear in his eye as those brothers said their goodbye’s and headed home.

  

Then there are the scenes with our children and grandchildren. Here's the latest Grandpa moment.

Update

Harold had his follow up brain scan yesterday to check for the appearance of tumors that may have been too small to detect when he had his gamma knife procedure a month ago. Five were found. It was not unexpected; still we’d hoped this part of the challenge was behind us. We paused for a moment, and then proceeded to next steps.    

Harold will go in for another gamma knife surgery as soon as it can be scheduled. Our neurosurgeon had told us he could manage the brain tumors if we could get Harold’s systemic cancer under control. We now appreciate how this works: Clean up the brain tumors with gamma knife as they appear. Meanwhile, hope the immunotherapy will stop the growth and spread of melanoma in the rest of his body. That would eventually also stop the growth of new tumors in Harold’s brain.  

We still need a miracle for a cure; yet it is wondrous to recognize there is science to support a medical strategy to extend Harold’s life. Without these treatments, Harold’s brain tumors would have been fatal in a couple of months.  With treatments they have extended patients lives at least a year and some are still doing well ten years later. Our neurosurgeon’s success rate has been way above the national average.
 

Friday Harold has his second immunotherapy treatment.  

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.