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Saturday, December 7, 2013

It was a little after 2:00 on a chilly Saturday afternoon in the middle of Hedge Road just about 100 meters from Warren’s house. Margy and I had shown up just in time for Warren’s afternoon walk and Elizabeth offered to let me take over with the gait belt. The sturdy, two-inch strap was secured with an industrial-strength buckle and encircled Warren’s chest right beneath his sternum. We had made it from Warren’s kitchen over the threshold to the porch, down the slope from the porch to the driveway, across the curb and gutter and down the street. Each of these passages was the product of supremely conscious effort – both on Warren’s part and Elizabeth’s. Warren did not so much “walk the talk” as he “talked the walk.” By that, I mean that Warren narrated what he wanted to do in minutest detail. By talking his way through each step, he sought to recruit his entire nervous system to do as he said and thought. 

“Left out, look up, eyes on the prize, engage the core, stand straight,” Warren said as we walked slowly down the street. We needed to rest several times in the first 100 meters but Warren said that he wanted to get his rhythm going. Elizabeth looked at me.

“So, Scott, do you want to try?” Elizabeth said.

“Sure,” I said.

Now it was my turn. Elizabeth showed me how to hold the gait belt with my palm up. I stood to Warren’s left with my right hand tight on the belt and my left hand at the ready to steady Warren by pushing on his chest or grabbing under his left arm. As I grabbed hold of the gait belt and we began to walk again, Warren moved without much rhythm. His left foot was supported by a velcro cuff around his ankle. That cuff, in turn, was strapped to Warren’s shoelace to hold his left toes up. Without the cuff and strap, Warren would scuff his left foot and might easily trip. Perilous. Warren began by stepping ahead with his left foot, then brought his right foot only as far forward as his left. It was a motion that omitted moving both left and right feet forward in symmetrical alternating fashion. As he moved through each step, I could feel his balance shift. I gripped the gait belt tighter. My bicep turned rigid.

“Straighten up a little, honey,” Elizabeth said. She sounded every bit like the experienced fitness instructor that she is. Warren is lucky to have someone with Elizabeth’s skills to help him. Warren shifted his weight to the left.

“Engage the core,” Warren said and stepped ahead once more.

We took a break. We had gone 25 meters or so. Warren said that it was his left gluteus muscle that had atrophied and tired easily. So, we needed to help him stand straight and tall – not so much by physical force applied through the gait belt as by coaching. There were, however, limits to coaching. Warren could not simultaneously walk and converse. Warren needed to apply the full force of his mental faculties to walk and walk only. So it ended up being two gently overlapping monologues: Elizabeth coached posture and breathing while Warren coached his own legs and torso.

“Am I holding the gait belt at about the right tension WT?” I asked.

“You’ll know if it’s too tight,” he said. “So long as my eyes aren’t bulging, you’re probably OK.”

Warren used a cane called a “Sure Foot.” It was a regular cane with a foot at the bottom approximately two inches by six inches. The foot pivoted but was damped by springs front and back that helped the foot maintain stable contact with the ground with each placement and push off. He held the cane in his right hand while I steadied him on the left, occasionally placing my hand on his chest to keep him from pitching a bit too far forward or under his arm to keep him from tripping if his left foot scuffed. I was surprised at how hard this was for me. My bicep ached and I found myself completely focused on each step.

“Now we are going to get a rhythm,” Warren declared. And we did.

Warren found a tempo that facilitated a slow but steady walk. For the most part, Warren did not strain at the gait belt and kept his weight centered over his feet. We proceeded for more than 100 meters before he needed a rest.

“That was great!” he said.

“That was really good, sweetie,” Elizabeth agreed.

“It just feels so good to get out of the house, out here in the sunshine with the leaves and the trees and the fresh air. This is perfect,” Warren declared.

“Are you OK, Scott?” Elizabeth asked. I would have preferred to have been cast into the pits of hell before I would admit how stiff and sore my bicep and wrist had become from the grip I maintained on Warren’s gait belt. Besides, Warren had made the call: It was a perfect afternoon.

“Great!” I said.

May 1, 2005

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Warren and I were on our way from Paso Robles, California, to Lake San Antonio for the Wildflower triathlon. The weather had been great: Rains had swept through central California at just the right times and in just the right amounts. In the weeks following the rain, the weather had cleared and wildflowers lined the road ditches, stretched across fields and scaled the steep bluffs.

“That’s wild mustard, the yellow ones,” Warren said. “And the purple is lupine.”

We had to get out of the car to look, to take it all in. The sun was just cresting the horizon to the east, casting deep shadows into the valleys and brilliant light across the live oak savannahs and grassy hills. And there we were, on our way to get our man cards punched by running one of the toughest triathlons in the world. But instead of hurrying to the venue to get numbered and rack our bikes, we were wandering around in ditches taking pictures of the rising sun and the beautiful wildflowers. Warren and I have never entirely satisfactorily played the role of he-men.

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“This is just perfect,” Warren said at the time and I agreed. That year, and every year before and after at Wildflower, we used that drive to count our blessings, to inventory our good luck and all of the things that had gone right for us.

My favorite photo of WT. From the 2005 Wildflower trip.

My favorite photo of WT. From the 2005 Wildflower trip.

Saturday, December 7, 2013

Back on our walk, it struck me how little Warren had changed despite the infirmities imposed by his glioblastoma. It was a perfect day and Warren was willing to declare it so, to make it so.

On our way back to his house, some kids were playing soccer on the street.

“Stop,” Warren said to me. He couldn’t both walk and avoid the soccer fray. Any unexpected thing that got into his way – a car, someone walking their dog, a stray soccer ball – all of those would “overload the channel” as Warren said. Even the leaves and seed pods on the street risked throwing him off balance if they caused his left foot to scuff or stopped his cane from taking firm purchase on the road surface.

“Let’s head in,” Warren said. “This has been great.”

Back in the house, we unbundled Warren after he had safely taken his seat in his wheelchair. This was not a trivial task because Warren’s left hand and arm were not much within his control and were not easily extracted from his sweatshirt. The fingers of Warren’s left hand naturally curled up toward his palm, though he consciously extended those fingers while he walked. Unfortunately, the concentration required to get the sweatshirt off did not permit getting his left hand to operate, his elbow to bend or his arm to rise. I made sure to gently clear his pinkie from the space between his wheelchair brake and tire. Fortunately, Margy and I freed him from his sweatshirt without relieving him of any teeth or a fingernails.

Warren chose to keep his helmet on, even in the wheelchair. Warren’s helmet looked like a hockey helmet, just more expensive. A medical prosthetics manufacturer made the helmet just for Warren because Warren’s skull was missing an approximately two-inch diameter section that got infected this summer and needed removal. So, like a baby, Warren had a “soft spot” in his skull, a space only covered by his scalp. He let me touch it. I felt it bulge slightly. The intercranial fluid was pushing out at that spot with swelling due, in some part, to tumor regrowth. The helmet did not just protect the soft spot, it protected Warren’s entire head. Much of the skull’s strength depends upon forming a complete unit. Remove part of the skull and the strength is compromised. It’s like punching a small hole in an egg. The egg is pretty strong if intact but extremely easily broken if perforated. If Warren fell with his compromised skull, he could really get hurt. Keeping the helmet on – even while seated – seemed like a good idea.

After Warren’s nap, we tried to look at MRI images of Warren’s brain on a CD from El Camino Hospital in Mountain View. We couldn’t make the computer cooperate, so Elizabeth and Warren showed us a video that Elizabeth had taken during a visit to UCSF Medical Center. Warren and Elizabeth (wisely, I think) had videoed Dr. Jennifer Clarke, Warren’s neuro-oncologist as she assessed Warren’s MRIs. Dr. Clarke showed how the tumor had progressed through MRIs taken in succession a few months apart. It was clear, even to a layperson like me, that the tumor had “progressed” and was exerting more pressure on the brain. Then Dr. Clarke recapped some of the treatments Warren had undergone thus far: Temodar, carbo platen, CCNU and the DC-Vax vaccine regimen that Warren had begun in London about a month before. Dr. Clarke noted that she hoped that the vaccine treatment would soon provide some help. She even acknowledged that some swelling may have arisen from the vaccine uptake, but she was not at all sure. Then Dr. Clarke spoke more slowly, pausing as she considered various alternatives. She was searching for therapies that might prove helpful. In each case, she said something like, “I am not wildly enthusiastic about….” After thoughtfully regarding the possibilities, she said that she thought Warren should begin Avastin. The video ended there. It was very helpful because the combination of the MRIs and the doctor’s considerations could be played over and over so that there was no need to wonder what she had really said. More telling, however, was Dr. Clarke’s tone and tempo as she sought to determine what might help given the tumor’s reluctance to yield to the treatments thus far. It wasn’t a “feel good” video except to say that it appeared that Dr. Clarke was a thorough, thoughtful and very humane person, just the sort of doctor I would want if I ever ended up in a similar spot.

Sunday, December 8, 2013

Margy and I spent much of the day running errands – getting soil amendments to plant flowers in Warren’s and Elizabeth’s yard, buying a CD changer to replace Warren’s aged and skipping CD changer, then doing small chores around the house. It felt great to be up and around, to do things that needed to be done.

We got reflective stars and stripes to place on Warren’s helmet and cane because on Saturday evening we noted that it might be hard to see Warren and Elizabeth if they took a walk at or after sunset. Margy artfully arranged those stars and stripes to give Warren’s helmet a fun, racy look. Of course, it was difficult to tell if we had adequate reflectors on the helmet so I suggested a test: We would leave Warren in the street after dark and if he got run over, we would need to apply more stickers to his helmet. If he was not run over, the stickers were adequate. Warren and I got the giggles about this and he admired my dedication to scientific method without specifically making time to actually carry out the experiment. Warren and I have been fortunate through the years in not trying out many of the things that we have dreamed up together, this registering prominent among them.

Warren felt good so we went downtown for dinner. We found a parking spot and got Warren into his chair. I pushed. As we entered the restaurant in downtown Palo Alto, I couldn’t help seeing people look at us. I wanted to tell them that Warren was just fine, that he could think and talk. I wanted to tell them that this wasn’t anyone’s fault; he hadn’t wrecked a motorcycle or been run into by a drunk driver. This was just the result of some wayward strand of DNA, a seed deep inside his body that had sprouted in a very unfortunate way. In the end, I just smiled and we joked with a few people in the elevator, as much to amuse ourselves as to let them know that we were OK – within the expanded reaches of what OK can be. After dinner, I told Warren that I was in a hurry to get out of there and that maybe we should take the stairs instead of the elevator. Warren laughed and made the sound that a runaway wheelchair would make careening down a staircase.

Monday, December 9, 2013

Margy and I visited for a couple of hours before Warren and Elizabeth headed out to Warren’s dentist appointment. We took a nice walk. Warren got an even better rhythm than on Saturday. Once we got back inside, we had fun remembering things from the early years of our friendship dating all the way back to 1984.

We decided to take this group shot:

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Before they left, Warren showed us his parlor trick. When he tried to move his left hand, his left leg moved.

“I think that this stuff is just fascinating,” Warren said.

Margy would not be able to come back down to visit Warren later in the week and needed to say good bye. That was very sad.

Wednesday, December 11, 2013

Elizabeth had not scheduled help for the afternoon and would leave Warren with me. On my way to their house, I stopped at Los Gallos, a Mexican restaurant in an ancient strip mall near Warren’s house. Los Gallos is a “cash only” establishment where they read off the ticket number to pick up your burrito in English and in Spanish. I ordered Warren two Super Burritos, one BBQ chicken and one veggie. He would eat one for lunch and save the other for a later meal. Warren’s appetite hadn’t suffered.

Warren and Elizabeth had just gotten home from an appointment and we decided to take our walk right away, saving lunch for later. The sun shone brightly on us as we headed out onto Hedge Road once again. It had warmed up nicely and I noticed that I was sweating. Warren got some good tempo but needed frequent breaks, too. Elizabeth had left us alone, just the two of us walking on a beautiful day, the crisp leaves in the trees swishing softly in the breeze. It was up to me to help Warren with his posture and balance. I noted that it was less fun than I had anticipated to jerk him around by his gait belt but that criticizing his walking and posture was surprisingly satisfying. Warren laughed.

On our return, I laid out our Los Gallos lunch. Elizabeth joined us, though she chose to eat something (much) healthier than Los Gallos. I noted that, at least in Warren’s case, chips and burritos were not the enemy. Warren reached for one of the cups of salsa that remained in the center of the table.

“Oh, I put yours right there,” I said, pointing to the cup of salsa just at the tip of his fork. Then I realized my mistake. I had put the salsa on his left side where he would not see it at all unless I pointed it out to him. Warren turned far to his left and spied the salsa with his right eye.

“If there is some food that you want to save for yourself, Scott, put it on his left side,” Elizabeth offered slyly. I said that I would keep that in mind for future meals and would likely use that with anything chocolate.

Elizabeth went to work and Warren and I used the opportunity to shop on Amazon for Elizabeth’s Christmas presents. Warren let me take the mouse and we got several things that I was sure Elizabeth would really like. Then Warren said that it was time for his nap.

Warren’s bed had a half dozen pillows at the head of the bed and two wedge-shaped pillows near where his hips would rest. There was a grab bar affixed to the bed frame side to help Warren hoist himself up, lie down gently and to prevent falling out of bed. It took a little time for me to pull back the covers and to arrange the pillows “just so.”

“Princess and the pea,” I muttered.

“Exactly,” Warren agreed.

I had arranged Warren on the bed and in proximity to his pillows according to his instructions before heading out to do the dishes from lunch. It felt wonderful to pull the covers down over Warren’s feet to stop any cold drafts, to get everything just right. I realized that it had been a long time since I had last tucked anyone in. I had missed it. I also realized how few people I had to take care of. Katie was away at college, I was no longer working, and no longer on the TCM board. As it turned out, I probably got much, much more out of taking care of Warren than he got out of me taking care of him.

As soon as Warren was all tucked in, I left the room with the door slightly ajar in case Warren needed anything. As I took two or three steps down the hall, I heard…

“Scott?”

“Yes.”

“Did you put my phone in here?”

“Yeah.”

“How about my headset?”

“Yes, Warren. Just call when you need me.”

I stepped away from the door again and headed toward the kitchen to do dishes.

“Scott?”

“Yes, Warren.” I hadn’t made it very far.

“Is my stylus there?”

“Right by your phone and headset,” I said. “Sleep tight.”

I turned toward the kitchen again.

“Scott?”

“WHAT!” I feigned irritation. Warren’s admin Peggy working in the office next door snickered.

“I’ve been drinking water before I nap,” Warren said. “From that Virgin Islands glass.”

“I bet you have,” I said in my testy voice. “How about if I look for the Virgin Islands glass but if I don’t find it you are going to drink water from any glass and you are going to like it, too, right?”

More snickers from the office. Warren laughed, too.

I found the Virgin Islands glass and filled it with water, then placed it by the phone, headset and stylus. As it turned out, I felt really happy to have found just the right glass after all.

We didn’t have that much time after Warren’s nap before Elizabeth came home. Warren and I had done a little research on Avastin. The Genentech site advised glioblastoma patients with great certainty about the side effects that may occur. For instance, 55% of glioblastoma patients taking Avastin get infections. The site didn’t offer much encouragement about the primary effects of the drug and disclaimed either shrinking tumors or extending lives. I guess that’s what happens when you let lawyers write your marketing materials.

It was time for me to go. I hugged Elizabeth and told her to take care of herself, that by doing so she could take best care of Warren. Then I bent down and hugged Warren. I told him that he had taught me a lot through the years and that I loved him.

It was dark outside and quiet except for the leaves rustling in the trees as I walked across Hedge Road one more time.

December 14, 2013

If my post leaves you feeling sorry for Warren, that’s your choice – a very understandable choice, too. It is not, however, the choice Warren has made for himself. Warren could feel supremely sorry for himself. Nobody would think less of him. Warren has chosen gratitude instead. He takes every opportunity to count his blessings, whether it is the great medical care he has received, the people who care for him deeply – especially Elizabeth – or just the warmth of the sun on a clear day. I am sure that Warren has bad days and that can’t be helped when contending with a disease for which there is no known cure. But Warren chooses not to have bad days. He doesn’t let stuff get him down, even big stuff. What would be the point?

I hope always to be able to take for granted those things that I have now, like the ability to walk without giving it a thought. Should I lose even those seemingly simple things, I can’t imagine facing them as bravely – even as cheerfully – as Warren. I am satisfied to make simple choices that Warren has taught me, to be grateful for so much good that passes without notice, to treat life’s small inconveniences as just that and, most of all, to feel grateful for the people who care about me, especially WT.

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5 Comments

  1. Just beautiful, Scott!

    >

    • Ward, Emmerson - Plymouth
    • Posted December 15, 2013 at 5:46 pm
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    • Reply

    Amazing post. Warren is lucky to have you in his life.

    Sent from my iPhone

  2. Amazing post Scott — thanks for all the wonderful detail, humor and compassion. Great you were able to share several days with WT in a typical Califormia December — Stuart O.

  3. Scott, the bond of friendship you share with Warren is PRICELESS……..Hope to see both you and Warren down here in St John, soon…..where EVERY glass is a Virgin Islands glass :>)

    • Bob Thornthwaite
    • Posted December 18, 2013 at 5:15 pm
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    • Reply

    Thank you Scott for that account. I am thankful I was able to be with you and Warren at one of the Wild Flower triathlons. I think we are all going to learn something from how Warren faces this challenge.


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