Monday, November 21, 2011
Part 19 - Black Badge of Courage
Continued from Part 18
Part Two of Our Trip To Duke/Our Journey of Hope
After a night at the hotel with multiple shift-changes to sit up with Dad during the night, we had to get up and get ready for Dad’s mid-morning appointment at the Brain Tumor Clinic. As usual, Dad insisted on being clean shaven, which took some extra time, but we were outside in front of the hotel right on time, waiting for the shuttle ride to the clinic.
A couple of week before our trip, we'd booked a room at that hotel because they had suite-style rooms (we had anticipated needing to take turns sitting up with Dad at night), because they offered a discount to patients at the Brain Tumor Clinic, and because they offered a shuttle-service to and from the clinic, which seemed like a better option than having to get Dad and his wheelchair in and out of our car, navigating an unfamiliar city, and dealing with hospital parking.
The driver pulled up in the shuttle van about ten minutes late, which made us really nervous because we didn’t want to have anything happen that would interfere with getting Dad seen at the clinic. (I had visions of us walking up to the desk to check in at the clinic and being told, “Oops! You’re late! Come back in a month!” – or worse, “Sorry! That was your only chance to get in!”) The driver hopped out and came around to greet us. He took a look at Dad in the wheelchair and said, “Um, can he stand?” (Sensitivity training, anyone? The person you’re talking about is RIGHT IN FRONT OF YOU and he can hear you!) “Yes,” I said, but then the driver opened the back door and I glanced into the van and saw several steep stairs. “Do you have a wheelchair lift?” I asked. “Nope,” Driver said, “but maybe you can just boost him up into this seat that folds out right by the stairs,” and with that, he reached in and pulled down the bottom of the folded-up seat. Great, now the majority of the stairway was blocked. When the driver saw that, he tried to push the bottom part of the seat so that it would fold back up, but it was apparently stuck. He fiddled with it for a couple of minutes more, and then I said, “We can’t be late for our appointment! I'll get him into the van if you can just put the wheelchair in the back so we can go.”
I locked the brakes on the wheelchair and told Dad to hold onto me instead of the swinging door of the van, which I knew he would reach for otherwise, and then to step up sideways into the van to squeeze by the stupid seat that was mostly blocking the entrance. Dad looked at me like I was crazy, but, with the trepidation of a person stepping out onto a ledge, he followed my direction. Little sideways-step by little sideways-step, we made our way into the van while Driver folded up the wheelchair and stashed it in the back. I got Dad seated and buckled and then my mom and J loaded up, and we were ready to go. “We need to get there as quickly as we can,” I reminded the driver.
This is the one part of the whole story from when Dad was sick that the topic came up of what we were experiencing possibly turning into good story-telling material one day: Evidently having heard the urgency in my voice, Driver quickly assumed the role of Mario Andretti. As the four of us in the back held on for dear life, he sped through the streets, all but taking the corners on two wheels. Whenever he had to stop at a stoplight along the way, he peeled out a mere nano-second after the light turned green and we were on our way again. My sister looked at me with a "can-you-believe-this" look and said, "This will be a great story, some day!" We couldn’t decide whether we should yell at the guy, cheer him on, or just laugh. We ended up opting for the last one, and, grateful that we were a lot less likely to be late for the appointment with a race car driver behind the wheel, we just held on for the ride.
When we squealed up into the unloading area in front of the clinic, Mario jumped out and came around to open the door on the side of the van. He tried again in vain to fold up the seat obscuring the exit. I asked him to get the wheelchair out of the back, and then I eased Dad down the steps, with both of us again moving sideways like a crab. I squeezed by Dad at the bottom of the stairs, and Mom and J came up behind him to steady him from either side so that I could help Mario, who was sweating bullets trying to unfold the wheelchair. “I’ve got it!” I told him, in a semi-panic because we were just minutes away from our scheduled appointment time. I slid one of my hands on either side of the folded up seat of the wheelchair and pushed down hard. Right on cue, the chair opened out, with my fingertips wedged in between the now-flattened seat bottom and the metal sides of the wheelchair. I instinctively tried to pull my hands out, but the last joint of my little finger on my left hand was securely lodged in there. I pulled it free and turned to help Dad get into the chair so we could dash to get to the check-in desk at the clinic.
When we got to the waiting area inside, Mom pointed out that my finger was dripping blood. Upon inspection, I saw that the fingernail was crushed and there was an inch-long cut on the side of the finger. It hurt, but not nearly as much as the thought of having anything interfere with getting Dad in to be seen for this appointment. I pulled a band-aid out of my purse and wrapped it around my finger in hopes that it would hold the fingernail in place and stop the bleeding. We couldn’t afford for the direction of this appointment, this day, this journey to be focused on anything other than a cure for brain cancer.
We sat in the waiting area for about ten minutes, and then we were called back. The nurse said that space was limited in the “intake area” so she asked if two of us could wait in the treatment room while only one of us went with Dad to the lab. I volunteered to go with him for blood work; I handed the Notebook to J and pushed Dad in his wheelchair down the hallway behind the nurse.
With the blood work and vital signs taken, the nurse directed Dad to get on the scale. The scale was situated on a platform and was in the middle of a wall with no grab bars or wall on either side. Dad waited for me to push the wheelchair closer to the scale but then (predictably) leapt up. I jumped around to be sure he made it up onto the platform and to steady him once he’d gotten up there. The nurse waited for me to back away from Dad so that she could get an accurate reading, but after a minute of wobbling on Dad’s part, I shot her a look and said, “Five-ten, 157,” which I knew to be his height and weight from the week before in rehab. “Got it,” she said smoothly, and we moved on into the treatment room.
The first of two neuro-oncologists we were to see at the clinic exuberantly entered the room a few minutes later and immediately went over to shake hands with Dad, who was sitting in a semi-reclined chair. Dad shook his hand and thanked the doctor for seeing him, and then the guy launched into some orientation questions (“What year is it?” “What’s your date of birth?” “What city are we in?” etc.), some of which Dad got, others of which he didn’t. I was literally grinding my teeth in anticipation; I felt like our destiny could be affected by one little thing we did/said or didn't do/say at that point. Next were the tests of strength and coordination and vision, which highlighted Dad’s left-sided sensation problems that had only gotten slightly better since before the surgery. The doctor asked Dad to stand, and I had to jump up to stand on Dad’s left so that he didn’t tip over to that side. The doctor, who evidently didn't anticipate the possibility that there could be safety risks to asking a potentially-impulsive patient to stand up on his own, made notes in the file (which I tried in vain to read upside-down out of the corner of my eye) but kept the conversation going. We discussed every medication that Dad was taking, and the doctor recommended that some be discontinued; his focus seemed to be only on treating the cancer and the most serious of the related conditions, which was fine by me. Finally, the doctor took a seat and got to the part we’d been waiting to hear about: the treatment protocol.
Here’s what he told us: the accepted treatment for GBM is a pill-form of chemo called Temodar, plus radiation. Recent research at their clinic and some other university-affiliated medical centers had been showing much better results when those two things were given in combination with two other things, another type of chemo called CPT-11 and a drug called Avastin. Avastin, he told us, had been referred to as “a magic bullet” for this and some other types of otherwise difficult to treat cancers. Avastin works by cutting off the blood supply to the tumor, which causes cancer cells to shrink and then (in theory) die. This drug has been used for more than ten years in other types of cancer and for about five years to treat this type of brain cancer when it has recurred, but only more recently had it started to be prescribed for brain tumors that had just been diagnosed.
“We don’t have any openings in any clinical trials for this right now, though,” he said, and then he saw the look of panic/fury/devastation on my face and quickly added, “but we can use the protocol from a trial to set up the treatment anyway.”
“How soon can I get it?” Dad asked.
“Here’s the plan,” the doctor said. “Tomorrow you will come back to meet with me and another neuro-oncologist and a nurse educator to go over the specifics of the protocol. This afternoon, I’m going to call your oncologist at home and give him the info so he can set you up to get the first dose of chemo and Avastin there on Monday.” That sounded great to us, and so we packed up and went to wait for Mario The Shuttle Driver in front of the clinic.
After a quick ride back to the hotel, Dad stretched out on the bed for a nap, while Mom and my sister and I sat whispering in the adjoining room. We were excited but nervous; I kept feeling like there had to be some kind of “catch.” Like Dad, I didn’t believe in Quick Fixes, but I really, really wanted to believe that this was indeed going to be a magical-type of treatment. I needed to believe it; it was the knot at the end of my rope and I was planning to hang on to it with everything that I had. I envisioned Dad a year in the future, smiling and looking healthy and saying “That Avastin sure did the trick!”
In all the excitement of our adrenaline-filled day, there was one thing that stuck out in our minds, though, one thing that made us worry more than anything else about the “magic” that was being offered: Of all the other brain tumor patients we crossed paths with that day, Dad was obviously the one with the most impairment. We were simultaneously buoyed with hope based on what we’d heard and read about this medicine and devastated by the realization that all the other patients there were functioning pretty independently. It was tempting to start envying the other brain tumor patients, the ones that were jumping up on the scale by themselves and not having to be pushed in a wheelchair, the ones who didn't need to be helped into the bathroom to give a urine sample to the lab, the ones walking around, carrying on conversations about their holiday plans, the ones smiling and looking like they felt like a million bucks. But, like the survivors clinging to life vests in the ice cold water after the Titanic had gone under, we were prepared to hold onto whatever we had and to hope for the best. We just need to get that medicine in him, I thought, and he will feel better and - who knows – maybe even get better!
We were all tired and ready for bed not long after supper that night. I volunteered to take the first shift of the night with Dad while Mom and J laid down on the pull-out couch in the next room. “I’m too tired to even watch TV,” Dad said, but then as soon as the lights were out he started peppering me with questions like “What did that doctor say is going to happen tomorrow?” and “What’s the name of that medicine I’m going to get?”
My dad was an agricultural consultant; he had worked in the “ag” business for forty years, and so I explained Avastin to him in farming terms: I told him that surgery was like pulling weeds and that by cutting out the tumor they had gotten most of the cancer but not all of it. I said that he needed radiation and medicine to get rid of the rest of it and that radiation was similar to using Round-up to blast weeds and chemo was like crop dusting. All of those things were helpful in controlling weeds in the field but not always effective at stopping weed growth all together. That, I said, was the goal of the Avastin he was going to get, and, in farming terms, it was like cutting off the supply of water and nutrients to the weeds so that they would be eradicated. “Got it!” Dad said, and he drifted off to sleep with a huge smile on his face.
Tears ran down my face as I lay there in the bed beside him. I was more desperate to get this medicine than I could ever remember being for anything. As I went back over the events of the day in my head, I realized that the little finger on my left hand was throbbing. I carefully removed the band-aid and saw that my fingernail, though still attached, was completely black. I didn’t care, though; I considered it an easy exchange for the magic that was said to be coming our way. I consciously stopped myself from thinking about what could have happened in six months or so when that black fingernail had grown out; I didn’t care if it grew out misshapen or whatever else, just as long as Dad was better when that point in time came.
Up Next – Part 20 – Birthday Chemo