Jennifer's husband Peter 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.
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| 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 Peter 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 Get 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!”
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