A Note from MattB’s Sister

Me, Matt and Heidi as Return to Oz' Dorothy, Jack Pumpkinhead & Belinda the Chicken on Halloween

Most of you know that I have written the majority of the updates for this blog. I’ve tried to keep a small detachment, writing in the 3rd person, in order to try to make sure the facts and details surrounding Matt’s condition and his needs are reported accurately. However, it’s this very detachment that I’m having trouble maintaining while trying to compose a proper update for everyone that loves and cares about my amazing brother, Matt. So, I’d rather just write from the heart, and tell you what’s going on.

An MRI completed last month showed that the Gemzar & Taxotere chemotherapy treatments rendered had had little effect on the main mass in Matt’s sinuses. Upon reviewing the scans, the doctors at the Burzynski Clinic in Houston went back, and reviewed the results from MattB’s genetic testing again, and recommended the use of a different chemotherapy drug, Alimta. This particular drug is not FDA approved for Matt’s specific type of cancer, which means Matt’s Orange County docs need to write a letter, petitioning Matt’s case to the FDA in order to receive the drug and administer it.

Not wanting to be  left waiting for what might be a very lengthy approvals process, Matt opted to receive an infusion of Doxil chemotherapy in the interim in an attempt to keep the tumor’s growth at bay. Matt and our mom received a long list of possible side effects to review before Matt signed off for the drug. They were told that Doxil is only administered once every 4 weeks, because of the strength of the drug. Matt’s reaction in the days and weeks following the infusion gave testament to Doxil’s strength and severity.

Within 3 days of the Doxil infusion, Matt was sick and vomiting. Our mom and Matt’s home health care team worked quickly to both re-hydrate him and administer anti-nausea medication via IV. In addition to fighting a rocky stomach, an intense wave of fatigue overtook Matt to the point where he was falling asleep during meals with his head visibly weighing him down as he inched closer and closer to his plate, nose-first. It was heartbreaking to watch. Matt’s girlfriend, Heidi, my mom, and I all took turns gently rubbing his back or shoulders to keep him conscious at mealtime. With every re-awakening, Matt’s frustration level would rise until he finally either finished a meal or decided to “take a break” and nap before trying again. The weeks that followed were a blur of excruciatingly long meals, morning noon and night naps, and a few brief moments of engagement with Matt.

I love and respect my brother so much, but seeing him go through those weeks as a zombie just trying to physically cope with the medication in his system made me feel that he was not living, but merely surviving. He was just not himself. It was scary, and difficult for me to communicate updates for you at that time. After 4 long weeks, the side effects have lessened, and while still tired and taking loads of naps, Matt’s schedule has regulated with more waking hours, and a re-engagement with life.

Still without FDA approved access to Alimta, Matt received information about a Phase 2 clinical trial for a different drug, a cancer inhibitor being tested in Los Angeles at the University of Southern California (USC). Last week, Matt and our mom made the trip up to LA to meet with the doctor heading up these trials, armed with a long list of questions about the drug, side-effects, expectations, and Matt’s eligibility. The meeting went well, and Matt came home exhausted from a day of travelling and dedicated engagement with the medical team at USC. With a few questions that came up in the days since that meeting, Matt will connect, again, with the doctor managing the clinical trial via phone, and then make a decision about joining the trial and receiving the first round of oral meds.

MattB during a recent sibling dinner at my place

Matt admits that his body is tired. When we were young, Matt was always on the more scrawny side, and even though I was younger and shorter, I often out-weighed him. Now, despite the 7″ height difference between us, we are the same weight. Between the tumor’s invasion of his sinuses and the vast amounts and strong doses of daily medications he is on, Matt has lost much of his proprioception. For a guy that had cultivated such an attuned sense of his surroundings, to the point where felt confident travelling to places both familiar and unknown using public transportation and a friendly smile, this lost of independence and mobility has been devastating. Preparing for an outing often requires as much of Matt’s energy as the actual outing itself. Bearing witness to his struggle against low physical energy, I find myself feeling incredibly lucky each time that we are able to spend time together.

Despite all of the challenges Matt continues to face while fighting this cancer, his spirit remains incredibly bright. Rousing him from sleep is sometimes a difficult process, but once awake, Matt’s witty personality returns and he makes jokes and teases those around him to help lighten moods and engage with loved ones. I’ve never witnessed such a strength and determination in another human being as I have in my brother. In describing the pain he experiences, Matt says that he often talks himself through it, while he waits for meds to kick-in. Though the amount of medications he is on would likely sedate a horse, Matt remains conscious choosing to stay present with each moment and experience everything with attention and gratitude. While he has his bad days, for the most part, Matt is hopeful and driven to pursue wellness.

Next week is Thanksgiving, and I could not be more grateful for the incredibly inspirational brother I have. It’s not easy to watch him struggle, yet I also feel so honored to be close to him and see just how powerful the human spirit can be. Matt challenges all of us to really dig deep within ourselves to actively choose to engage with the life we are given. Offering sincere compassion and empathy for each other, and seeking joy in every moment is often difficult. I watch my big brother practice these things with a true acceptance of what is and who people are without trying to change anything or anyone, and this brings him peace, which then extends to those around him. I know if I asked him, Matt would say that he is grateful to be alive this Thanksgiving. I hope all of you are as well.

Peace,

Andrea (Dre)