Dangerous Side Effects?

I handed Harold a piece of paper during his infusion today and had him write his own post. Here it is:

Fridays are still Fridays, the day before the weekend; even if you don’t go to work every day. I’m feeling good enough now that my Fridays (and most Monday’s and Wednesday’s) start with an early morning racquetball game. Today was no different. I won a game, lost a couple of games, hit some players and got hit by other players. A typical day at the court. 

After racquetball I headed to University Hospital for infusion #3. That process is also becoming routine: First the lab work, then a checkup with my oncologist, followed by the immunotherapy infusion. During the checkup I have the opportunity to ask questions and visit with this doctor I’ve seen periodically over the last three years. We share a similar sense of humor. Knowing that, I was ready for him today.

Of all the potential side effects of immunotherapy, I’ve got one of the most harmless – a rash. It was very minor after the first infusion but has become more pronounced the last few weeks. My doctor was examining affected areas on my chest, my neck, and then my upper back. Looking just under my left shoulder blade he exclaimed, “What’s this?” He saw the outline of a circle, angry red around the edges and clear in the center.
 

“Ringworm?” I offered. He didn’t buy that, but was intrigued and examined it more closely.

Sharon, realizing what was happening and unable to let it go longer said, “Harold, tell him what you were doing this morning!” 

“Racquetball,” I blurted out. The welt was the result of a direct hit (Thanks, Joel).  It had been hard to keep from laughing during the con, but now I let it all out. My oncologist heartily joined in.

He finished the exam then asked me to wait a minute, confiding that he wanted to show a colleague the “new rash” and get a second opinion. I realized we were going to pull the con again.  We did, it worked, and we all enjoyed the comic relief from the otherwise serious business of cancer. My oncologist only lamented that he wouldn’t get to write an article for the New England Journal of Medicine describing our new side effect. Then he left me with these parting words:

 “Harold, if you die in the racquetball court after all we are  doing to save you, I’ll kill you!”

Touché

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, have broken through the earth and opened 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 - Gamma Knife #2

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 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.