A tough month or so
I ran into an old friend the other day who had recently started chemotherapy. He looked good, but tired. I knew the treatment was tough. We chatted a bit, and he mentioned that he really appreciated all the warm wishes and e-mails but that he sometimes became weary of well-meaning friends and family telling him to “be positive.” I laughed a bit because I knew what he meant. I haven’t undergone cancer treatments myself, but I know what Chris has gone through each and every day for years now. And, honestly, when you’re in the middle of this struggle, you’re not thinking sunshiny thoughts. It can be a grim experience, all the things big and small wear on you day-in and day-out. You want to stay positive. Not just in the sense of putting on a good face for family and friends but in the mental challenge you’re up against. You have to stay positive; it’s not an option. To falter can be devastating to your psyche. And, yet, you do falter sometimes. And whispers of frustration and despair do creep into your head no matter how hard you fight. I compare it to a long run — towards the end I’m running as hard as I can, keeping my focus on finishing without letting up, and I do get there. The thoughts I’m usually thinking, though, aren’t fit to print in a blog.
That’s kind of how the last month or so has been for Chris and me. We’ve been through a lot. Two bronchoscopies, a new drug therapy (Inlyta) with all the side effects that go with it and a double-dose radiation treatment session with double the fatigue. Dr. Collins, our radiation oncologist at Georgetown, joked during one of our recent appointments that he was surprised to see Chris sitting in an upright position.
The physical grind isn’t necessarily the worst, though. At least, I feel that I can say that. Chris, of course, is the only one who truly knows. Yet I’m with him every day. I see how the radiation wears on his body. I hear him when he is getting sick; I wait anxiously outside the door. When he wakes up in the middle of the night, I wake up with him. The emotional grind can be even more wearing in some ways, though. It’s an insidious form of weariness, slowly building as little bits of disappointing news stack layer upon layer over time until you realize that you’re exhausted.
Chris and I have been at this fight for more than three years now. We have tried just about every treatment option — from gold standards to untested clinical trials — and nothing has worked. We have never had a CT scan return with fabulous news. We have clutched the positive when there has been some hint of regression or stability, simply ignoring the growth of the disease elsewhere. Even though we knew better. The truth is, there has never been true regression of Chris’s disease. These drugs have worked for so many others; why haven’t any of them worked for us? It can seem unfair. I feel absurd just saying this. Life is not fair or unfair. It just is. At some point you just want to shake your fist and ask why can’t we have what others have? Why can’t we have at least some relief, even if for a little while?
Following the first bronchoscopy last month, we were certain that we’d figured out what was causing Chris’s breathing problems. We were alarmed that a tumor was actually growing within Chris’s airway, nearly collapsing his lung, but we were actually happy when we learned what was causing the problem and that it could be fixed. Dr. Anderson, our pulmonologist at Georgetown, burned out the tumor and Chris’s breathing was better overnight. We were excited — took the kids down to Disney World. Then, about a week after the procedure — right in the middle of our Florida trip — he started having a congestive cough again. The shortness of breath kicked in and he was feeling wiped out. He was still undergoing an aggressive radiation course, so we took comfort in this being the explanation for the fatigue and shortness of breath. We kept our hope pinned on the already scheduled second bronchoscopy, where Dr. Anderson was planning to install a stent to keep that bronchial tube open. This stent became a kind of mythic operation in our minds. It was going to solve not all, but the worst of the breathing congestion.
A funny thing happened on the way to the second bronchoscopy, though. (Funny strange, not funny ha-ha.) That latin-spewing monk hadn’t moved back in — there wasn’t even a garden gnome to be found. Chris’s bronchial tube remained almost 90 percent clear from the previous procedure. Dr. Anderson burned away some new tumor growth, but he didn’t feel the need to insert the stent. Most people would expect patients to be ecstatic with that kind of news … but to be honest, we were disappointed. Because if the bronchial tube isn’t blocked, then we still don’t know what is causing Chris’s congestive cough and obstructed breathing. And not knowing means we can’t do anything to proactively fix it. We are left a little confused, a little disappointed, a little frustrated. A little anxious.
We went back to Johns Hopkins on Thursday for a CT scan to see how things were looking throughout the lungs and chest. To add to our already confused minds — the scan wasn’t very conclusive either. A majority of the mets in Chris’s lungs grew again, but the radiologist did note that some didn’t seem as “enhanced.” Others appeared to be showing signs of necrosis (which means they’re dying). The necrosis, however, is likely due to the radiation — which was of course the whole point of more than a month’s worth of daily radiation sessions. These radiation sessions, however, have been focused on two specific monster mets — one in Chris’s right subclavicular area and another along the wall of his left lung. They could not address the numerous (“too many to count,” according to the radiologist) mets shotgunned throughout both of Chris’s lungs.
So what does it all mean? Do we stay with Inlyta and see if we get some clearly positive results? Dr. Hammers, our medical oncologist at Johns Hopkins, didn’t think so. I don’t either. We all discussed it and decided to cut our losses and move to a new drug.
The new drug we’re trying is called Afinitor; it’s an m-tor inhibitor. It’s similar to drugs like Sutent and Inlyta — but it blocks nutrients to the cancer cells from a different pathway. Dr. Hammers does not show a great amount of confidence in Affinitor. He actually apologized for not being able to offer better options. Clinically, results of patients on Afinitor aren’t as exciting as results with the other drugs (which is why we didn’t try it first). Still, we have hope.
While Afinitor may not work for as many patients as do the other drugs, it does work for some. It produces stability in a reasonable pool of patients, and at this point stability would be welcome. Even better, in a small sub-set of patients (about 2-3 percent), Afinitor has resulted in a significant reduction of tumor volume. Who knows — Chris might fall into that sub-set. We knew IL-2 produced a complete response for only about eight percent of patients, but we were willing to go through the hell of that treatment because who’s to say we wouldn’t be one of those eight-percenters? And while stability of disease would be a welcome change, who’s to say we won’t be one of the three-percenters? Somebody will be. Why not us?
So, we’re going to give it a try. And though we may falter briefly, though we may not feel all sunshiny at the moment, we’re in the battle and Chris is still fighting hard. We’re gearing up again, and we have faith that this time it will work, and we will have time to resume a somewhat more normal life again, at least for a while. And so I hope that when we get scans in a couple of months, I’ll be sending a new positive update complete with rainbows and chocolate sprinkles. And Chris will be playing golf with his brothers again. And Josie will be crawling all over him, climbing him like Mt. Everest and jamming elbows in places they should never go. And Kate will be reading Scooby Doo to him and drawing her fabulous renditions of Minnie Mouse and Goofy. And I will be sitting with him, taking it all in, grateful that, finally, things are going our way for a while.