Saturday, November 26, 2011
Continued from Part 20
Part Four of Our Trip To Duke/Our Journey of Hope
One of my all-time favorite books is Flowers for Algernon by Daniel Keyes. In the story, the main character, Charlie Gordon, decides to participate in a research study in which he undergoes an experimental surgical procedure in an attempt to increase his IQ.
When I first read this book in high school, I spent a lot of time thinking about the thought-processes of the characters in this book, and even then I wondered why Charlie Gordon was so eager to have the operation knowing there was such risk to it, risk of side-effects and risk of his hopes being dashed if the treatment didn't work. I get it now, though: He did it for the same reason we took Dad to Duke - to err on the side of hope, to leave no stone unturned. We took Dad to Duke and were eager to sign on for him to get the Avastin because as much as we knew that the possibility of having that plan fail would be hard to live with, we knew that the result of not having a plan that we could believe in would be much more devastating. And as much as there was now Avastin and chemo running through Dad’s veins, there was Hope running through mine for the first time in what felt like a really, really long time.
Our third night in Durham, the one after our second day of appointments for Dad at the Brain Tumor Clinic at Duke, the first night after Dad’s first dose of Chemo/Avastin, was fairly anti-climatic. Dad didn’t get sick (sicker), he didn’t sleep much (and neither did we), but all in all, nothing big happened. We got up and got Dad going as early as possible the next morning, which was Thanksgiving Day. We didn’t think we would make it back in time for the extended-family turkey dinner that had been planned by my aunt and my cousin, but we hoped to make it to my parents’ house before dark so that Dad could wind down before too late in the day.
My brother-in-law took the wheel for the drive home, and Dad volunteered himself to ride jump seat, although he pointed out, “Someone in the back seat had better co-pilot!” Dad seemed more conversational, less anxious, and – maybe this one was my imagination – more “on-task,” at least for the first part of the drive that day. I had already begun my newest job as Microscopic Improvement Recognition Specialist, and I was on the lookout BIG TIME for any signs of Avastin "The Magic Bullet" kicking in.
As I had commented to the team at the clinic at Duke, our drive to Durham had been an education in many things, among them the inaccessibility of at least the part of the country that we had covered on our long journey that day. Simply put, Dad needed help to make it safely into the bathroom, and he needed on-the-spot reminders to use his walker even when he was in the bathroom. Those things are hard to arrange when a man’s Support Crew is composed of all females. We were way too desperate and too concerned about Dad’s safety to worry about embarrassment, though, so we just did what we had to do along the way, from blocking off the men’s restroom to yelling reminders to Dad through a closed bathroom door to asking a friendly-looking stranger going into the Men’s Room to check on Dad when he went in there. One gas station didn’t have a curb-cut (ramp), and so I just parked right on the sidewalk so Dad wouldn't stumble getting up and down the curb on his walker. It was stressful for all of us, and all of the in-and-out’s from the car to use the “facilities” were quite time-consuming on the way to Durham.
On the return trip, though, my brother-in-law was there for guidance, and he figured out that it was much easier for Dad to use the wheelchair than the walker to get in and out of places when we stopped. We orchestrated the routine of the wheelchair retrieval and set-up/getting Dad situated/maneuvering into the building and into the restroom in a matter of minutes, and the process went much more smoothly that way. Riding shotgun in the front seat, Dad was in a good mood for most of the drive, talking guy-stuff, business, and sports - including the newest addition to Dad's Revised Bucket List, going to an NBA game - along the way.
That was the Good News of the Return Trip; the Bad News was that it was Thanksgiving Day, and, at least along the route we were driving, nothing was open except for gas stations. We were trying to keep Dad eating so that the nausea we had been warned about wouldn’t set it, and it was a difficult challenge to find something for him and for us to eat besides complete junk food that day. About two-thirds of the way along, Dad started talking about wanting a strawberry-banana smoothie from McDonald’s. We thought that The Golden Arches would surely be open, but when we got off the interstate and went through the drive-thru at one that had lights on inside, a recording said, “Sorry! We’re closed!” Dad was uncharacteristically angry; we could tell that the strain of the trip and everything else was wearing on him.
Dad’s level of confusion and agitation seemed to be inversely proportionate to the number of miles left to go until we got him home; the closer we got to my parents’ house, the more anxious and less mentally clear he appeared. Thinking it would encourage him, I reminded him that the rest of his family – my other sister and my brother, their spouses and my middle sister’s husband and mine, plus all six grandchildren would be at my parents’ house waiting to see Dad when we got there. That threw him for a loop: he said he thought that he was on the way to get chemo; he didn’t remember having gotten it the day before, and he said he wanted to get it right away so he could feel better. At that point, he was really out of sorts; he said over and over that he just wanted to go home and have peace and quiet so he could rest and get better. I texted my husband to try to explain; the family members that were gathered to celebrate the homecoming were very disappointed, but everyone cleared out in hopes that he could rally when he was back on his own turf.
We were in the beginning stages of figuring out the intricacies of a new pharmacological routine; in addition to getting Avastin and CPT-11 (chemo) by IV the day before, Dad had begun to take the one-pill-per-day type of chemo as part of a 5-day per month cycle per the new protocol. The chemo pill was relatively simple to administer as far as those things go, but there were a few important guidelines we had to adhere to like only giving it to Dad on an empty stomach, washing our hands thoroughly after touching the capsules, and not coming into contact with any of Dad’s bodily fluids while he was taking the pills, which included having to be sure the lid of the toilet was closed before the toilet was flushed each time (yet another reminder to shout to him through the closed bathroom door). He also had a finely-tuned anti-nausea pill regiment, and that, coupled with the strict chemo rules and regulations, made me want to stay right with Dad after we got home that night. I was so afraid that one little mistake would negate the progress we had been promised, and, after witnessing Dad struggling so much on the trip that was so very difficult on him, I wanted to do anything I could to protect him and to comfort him.
It seemed like a lifetime had passed in between the time we had backed out of the driveway to go to Duke only 3 days before and the time we pulled into the driveway at the end of the trip. So much had changed, not in Dad’s condition but in what we knew and in what we thought was reasonable to hope for. It felt like our free fall was finally coming to an end because we had found a ripcord to pull so that our parachute could open. It seemed like we could round up when we counted our blessings because we could believe that more of the good stuff was just around the corner. It appeared reasonable to lean into the curves and just wait and watch for improvements. As I said on the Care Page that day, “the trip was tiring but very worthwhile;” as a result of our journey, we now had something to believe in, and that seemed to be exactly the kind of medicine we all needed.
Coming soon … Part 22 – Bumps In The Road
Wednesday, November 23, 2011
Continued from Part 19
Part Three of Our Trip To Duke/Our Journey of Hope
My middle sister’s husband took a red-eye flight overnight to join us on our third day in Durham. As happy as my mom, my sister, and I were to have him there for reinforcement, I think Dad was even happier; he was really grateful for some male company. The weather had gotten chilly since we’d gotten there; my brother-in-law had worn a hat and had brought a matching one for Dad, which Dad put on as soon as he got it. It was my sister’s birthday that day; we sang Happy Birthday to her in the hotel room before we left for our second day of appointments at the Brain Tumor Clinic.
|The birthday girl with Dad, who's wearing his new hat|
Since we had additional support that day, we decided to forego the Shuttle Ride From Hell and have my brother-in-law drop us off at the clinic for our mid-morning appointment so that he could get a couple of hours of sleep in the hotel room and then pack up and check out before picking us up so that we hit the road after the appointment.
We made it to the clinic in plenty of time and were called back into a conference room just a few minutes after our arrival. Doctor #1 from yesterday entered the room along with Doctor #2, the guy who was actually in charge of the clinical trial with Avastin there. They got right down to business, filling us in on what a thorough review of Dad’s records and test results had revealed: “The MRI from just before he left rehab,” Doctor #2 said, “showed that the tumor had more than doubled in size since the debulking four weeks prior to the scan. There was essentially very limited surgical benefit.”
The room was quiet for a minute while we took in this information. I couldn’t stop myself from quickly calculating in my head that if the tumor was originally approximately 4 cm in size and about 80% was removed during the surgery, what was left was about 0.8 cm. Now they were saying that that had more than doubled in only four weeks, plus another five days had passed since the MRI, and so the tumor was probably close to 2 cm in size at this point. And, even more alarmingly, in less than another month, it could potentially be back to the size it was when it was originally discovered. Back to Square One. Damn.
My next thought was how to bolster Dad’s spirits, since at this point I didn't think I could protect him from the news that had just spilled out like a toxic gas leak in the room. I looked over at him and saw him flipping through a magazine that had been left out on the conference table. I couldn’t tell if he'd heard what had been said or not, and I couldn’t decide if I thought it was worse if he had heard it and was in shock or if he was so off-task that he hadn’t even heard the news.
I told myself that we had to focus on what could be done, not what had or hadn’t been done or anything else, and so I charged ahead: “What do we do now?” I asked these men, who were reputed to be some of the leaders in research and treatment of brain cancer in the country.
Their answer was simple: “Let’s get the nurse practitioner in here to explain the details to you and let’s get Avastin going.”
Well, OK. Nurse practitioner came in with a neatly organized 3-ring binder full of info about Avastin and the two types of chemotherapy Dad would be getting according to their protocol. She went over it all in detail and also explained how we could get in touch with someone at their office should we have problems or questions. Just after she finished talking, another nurse stuck her head in the room and said she had just gotten a phone call from the nurse practitioner at Dad’s oncologist’s office at home, who said that since Avastin was not covered by Medicare, they had cancelled the appointment for Dad to get the Avastin and chemo there on Monday. WHAT??? There was some back-and-forth on this between the staff there; finally the nurse practitioner left the room to try to get in touch with Dad’s oncologist to see what was going on.
While she was gone, the two doctors asked if we had any questions about anything for them (heh!) – um, just a few, yeah! We tried to be succinct, but we felt like it was our one-shot at getting a lot of information that we needed to know. They were extremely gracious and patient. We found out that the team at the Brain Tumor Clinic at Duke saw about 750 patients with newly diagnosed GBM yearly (in comparison to the 5 or fewer cases most oncologists saw annually, even in major cities). We discussed alternate treatments that my sister and I had read or heard about and why the doctors felt sure that Avastin was a better option for Dad at this point. We asked about complementary types of medicines like melatonin and other supplements, calcium channel blockers, and Accutane, all of which have been shown in some studies to enhance the positive effects of chemo on this type of brain cancer. Over and over again we heard them say that Avastin was The Magic Bullet for GBM and that, especially paired with these two types of chemotherapy and followed up by radiation as per their protocol, and that they expected us to see good improvement in function for Dad and significant tumor reduction in a relatively short period of time. “It’s the one treatment that can shrink this type of tumor and improve neurological function, sometimes in a matter of days,” Doctor #2 said.
As far as I could tell, Dad wasn’t paying attention to much of what was being discussed in the room during this time; he was still browsing through a month-old copy of Time Magazine (WHY was that even in THERE? Irony, anyone?). When one of the doctors asked him directly if he had any questions, he said, “How did I even get this?” The doctors launched into an analysis of several things that are being researched as possible causation factors for a person with a “predisposition” for this type of cancer – farming chemicals, environmental pollutants, and one that really caught our attention: Agent Orange exposure from time spent in certain areas of Vietnam during the Vietnam War. The doctors said that one of the residents in their clinic was gathering information as part of a long-term study of possible causation factors for GBM and asked if Dad would like to participate. Dad immediately said, “Yes!” I asked what participation would entail, and we were told a blood sample and a DNA sample would be taken, and an interview that would take about an hour and could be done over the phone later would be conducted. Dad was eager to sign the papers to give his consent for that, and then we moved on to the next topic: the treatment protocol.
The Duke regiment for GBM treatment involved getting Avastin and the stronger type of chemo called CPT-11 by I.V. once every other week. For five days every month, the other type of chemo, Temodar, was also administered in pill form. This cycle would repeat over the course of four months, after which the CPT-11 would be discontinued, daily radiation would be added, and the Avastin/Temodar would be continued for another month. And then we would see how things were looking.
The doctors said that Dad could have only one beer per day during chemo because his liver would already be working overtime to process the chemo. ("I guess I can live with that," he said.) They said that the steroids should be tapered over the next few weeks under the direction of the at-home oncologist and that if sleep problems persisted Dad should just take Tylenol PM to help him sleep at night instead of something stronger. We asked about supplements as part of the treatment, and the subject of the use of medicinal marijuana came up. “I’d say you should try to get some of that,” Doctor #1 said. “It can help with sleep, anxiety, and nausea.” Diving right in, my sister asked where we were supposed to get it. “Oh, you know,” Doctor #2 said, “just go to a bar and see who looks like they might have some for sale.” Hmmmm. We weren’t sure about that option, but I wrote down “marijuana” on our to-do list, and the discussion moved on.
They handed us a prescription for nausea, just in case, and they said we should keep something on hand for diarrhea, which was often a side effect of the CPT-11, too. At that, Dad perked up and chimed in, “I HOPE I have diarrhea! Not being able to exercise in weeks is giving me the opposite problem!” Everyone laughed. The doctors encouraged Dad to avoid napping during the daytime and to exercise as much as he could “on the recumbent bike or just walking around the block.” Mom, my sister, and I exchanged looks on that one – Dad had been struggling to get from the bedroom to the den and back a few times daily, using a walker and with someone right beside him for supervision, and so we couldn’t really even imagine him making a loop around the neighborhood. “Just wait!” Doctor #1 said after he saw our exchange. “I predict that by Monday he won’t even need the walker to walk.” OK, sign us up!!
In the midst of the Q & A session, the nurse practitioner came back in and said she had spoken to Dad’s oncologist, who had told her that as far as he knew Avastin was not covered by Medicare for initially-diagnosed GBM, and, at $20,000 a pop, he didn’t want to order it for Dad until the financial end of things was cleared up. After more back-and-forth on this, Doctor #2 left the room for a minute and then came back in and said, “I want him to get Avastin as soon as possible, and so let’s do it here, today. Our financial secretary says that Medicare just started covering it for cases like this last week and that it shouldn’t be a problem, but if it is, our clinic will eat the costs for this dose of it and then your oncologist’s office can have the next two weeks to figure out how they are going to get it covered or paid for before you need it again.”
Wow. It took about 30 seconds for that to sink in, and then Mom, J, and I were in tears. J said, “Thank you!!! It’s my birthday, and this is the best birthday present I’ve ever gotten!” There were smiles all around.
“You’ll need to stay in town another night just to be sure he doesn’t have any unexpected side effects. The chemo lab has one opening left for today, and it’s in ten minutes. Can you stay an extra night, and can you get him right upstairs?” Um, does a bear live in the woods??
With all the commotion, Dad hadn’t really caught on to exactly what had transpired, and so I just gave it to him in a nutshell: “You’re going right now to get the medicine that is really going to help you!”
“Well, let’s go!” Dad said, and we were off to the chemo lab.
By the time we got upstairs and had filled out the paperwork and then gotten called back to the chemo room, Dad was very anxious; he wasn’t sure what was happening and was very overwhelmed. The nurse decided to give him a sedative as soon as he had been hooked up to the I.V., which she did in a flash. She gave us some pamphlets and talked about possible side effects of the treatment. “It's very likely that you will lose your hair,” she said somberly. Dad perked up at the mention of that; he very animatedly said, “How soon will it come out? I hate that I haven’t been able to get my head shaved lately, and I want my head to be completely smooth!” The nurse said that was the first time any of her patients had actually gotten excited about the likelihood of going bald!
Just before Dad drifted off to sleep, he looked at me with wide eyes and said, “I know the doctor said this stuff is really expensive. How am going to pay for it?” I told him that he shouldn’t worry about it because his insurance would cover it, and, with half-closed eyes, he mumbled, “Thanks for the Medicare, Obama!”
While the toxic chemo and Avastin The Magic Bullet slowly dripped into Dad’s veins, he slept so deeply in the chemo recliner that he actually snored a little. Huddled in the corner beside him, I conjured up thoughts of Pac-Man gobbling up the cancer cells (I’d read that this could be helpful and figured what the hell!). Mom and J went back downstairs to meet with the social worker to learn about possible benefits and programs for which Dad might qualify. The nurses bustled around busily, but the room was quiet. The space felt sacred. I focused on the high-dollar juice dripping from the bags on the IV pole and thought, “Bring on the Magic!”
Continued here … Part 21 - Erring on the Side of Hope
Monday, November 21, 2011
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