One week ago, Dan was hospitalized again. Our experience taught me many things.
#1, of course, again, is that everything around us is beautiful and luxurious. We are so lucky to have everything in place as it is, and enjoy it how we can. The comfort of our own bed, the taste of ice water, the moment when the dog nudges us in earnest, the laughter of Raine. We have a beautiful home. We have a car that isn’t causing us trouble. We have doctors who are a formidable and passionate team. We have each other. There are hard moments where I feel like I can’t reach across my anxiety and fear to get to Dan, but I find a way; I try to bring joy into the moment, I try to confess, I simply touch his beard. I just keep trying.
#2 is that the brain radiation and chemotherapy (Cisplatin/Pemetrexed/Ruxolitinib) is doing exactly what we need it to do–reducing the tumors. After the trauma of learning about his cancer, I was still anticipating more bad news. I was afraid that nothing had changed or that the tumors had grown or multiplied in his brain. Anyone who needs to treat tumors knows that it is a process–Scans/tests, treatment, waiting, repeat. My friend Tina likes to call it a “hurry up and wait” situation. I am a bit of pessimistic waiter. We weren’t expecting to have scans and feedback for another month, but the circumstances that landed us in the ER demanded it. So we are THRILLED that the CT scans and MRI tests showed the reduction of the tumors in his brain. Dan is a very fortunate man to have small side effects from radiation and chemo–some hair loss, a distaste for sugary things, fatigue the first few days after treatment. This is great news that his initial treatment is working and also not causing him to be sickly with side effects.
#3, however, is that Dan has swelling in his brain. This caused his brain to shift off-center in his head. These things caused symptoms of nausea, vomiting, headache/pressure, and affected his handwriting, movements, and thinking. This is actually a side effect of something that is good. A neurosurgeon came on board to consult with the oncologist and radiation oncologist regarding this area of his brain. With an elevated temperature Wednesday, our team had to rule out infection. They did. (Good.) Then together, Dr. Gore, Dr. Duffy, and Dr. Louie agreed that the swollen tissue is caused by the dying/shrinking tumor that it surrounds. The question became, Could steroids alone control the swelling? They hoped so. Dr. Gore gave us time. They sent us home for the next few days to allow the steroids to treat the swelling. We went home with the understanding that if the swelling increased while he was on the steroids, he would need an immediate awake craniotomy, a very “House” or “Grey’s Anatomy” type surgery, where Dr. Gore would remove the tumor while Dan is awake to have cognitive functions preserved. An MRI was scheduled for Wednesday, the day before Thanksgiving.
This is how happy we were that Dan got to go home. And we were also happy because #4.
Dan’s genetic mutation results from Foundation I came back and Dr. Duffy had just informed us that his tumor has the ALK variation. Dan initially tested negative for this mutation, but the full DNA sequencing confirmed he is one of the 5-7% of NSCLC patients who are ALK positive. Dr. Duffy actually wanted to jump up and down for joy but she refrained. I joked about throwing an ALK celebration party. (I actually might have if I wasn’t so tired…)
Here is a nerdy description of ALK: “Tumors that contain the EML4-ALK fusion oncogene or its variants are associated with specific clinical features, including never or light smoking history, younger age, and adenocarcinoma with signet ring or acinar histology. ALK gene arrangements are largely mutually exclusive with epidermal growth factor receptor (EGFR) or KRAS mutations . Screening for this fusion gene in NSCLC is important, as “ALK-positive” tumors (tumors harboring a rearranged ALK gene/fusion protein) are highly sensitive to therapy with ALK-targeted inhibitors” (UpToDate).
“ALK-targeted inhibitors” is one of the best phrases I have ever heard in my life. It is difficult to explain the bittersweet relief/joy about learning this information. Dan still has metastasized NSCLC adenocarcinoma. There is still no definitive cure. We have still been given a shorter timeline together than we ever expected. But the best way we know how to describe the good news about this information is that our oncologist now has additional tools in her belt that she didn’t have before, which give us More. Time.
This is the best news we have heard since Dan’s diagnosis.
There are two research hospitals in the U.S. that have been doing groundbreaking work on ALK (MGH and UCD). These hospitals have helped discover and tweak the drugs that have a targeted ability to destroy ALK tumor cells. (Meaning, Dan gets targeted chemotherapy drugs and not just standard drugs that attack healthy cells in his body. SUPER AWESOME.) Currently MGH is researching ways to solve the problem of ALK cells eventually resisting some of these treatments. For example, some patients on 1 particular drug find it effective for only 7 months. Others benefit for up to two years! And there are numerous drugs available to us now already–as in, not in clinical trials or awaiting trials. And, we are keeping an eye on everything that MGH and UCD are doing so that when there are clinical drugs at times when Dan needs new treatments, we can use them. There are many more possibilities now for treatment than there were before. I no longer feel the sensation that we are trying to nail jelly to the wall.
I’d like to take this opportunity, on Thanksgiving, to say how grateful I am for science. How grateful I am for nerdy people who spend their entire lives obsessing over these vital components of our biology. I am grateful for research. I am grateful for medicine. I am grateful for Dr. Duffy, who has spent her career devoted to this science and the stars have aligned for her to treat Dan and help him. We recently learned that Dan and she are linked by two mutual friends. Such a small world we live in, and I find these stars that have aligned to be very bright. I am thankful that she called us today, on a holiday, to tell us that Dan’s swelling has reduced and he does not need surgery.
I am thankful that tomorrow, we will take Raine to Brownen and he will play happily and confidently while Dan resumes chemo. I am thankful that I will get to see the same beautiful trees out the window and while we travel, breathe the damp Oregon winter air. I am thankful that doctors, social workers, counselors, accountants, naturopaths, acupuncturists, massage therapists, dietitians, nurses, friends, family, and even strangers are helping Dan and I with the planting of seeds for cultivating our new reality. It has been a sprout at a time, each day since September 15th–buds in dirt, growing, giving us everything that we need. It may not be the crop I expected, but I will remain grateful for every fruit, trunk, blade, or vine.