My warrior drug, the fair Lady Lorlatinib Lobrena, has proven to be strong. (Yes, she has a new surname. She has been FDA approved to treat ALK+ NSCLC -not ROS1 yet- and that is how she is now introduced.) After two years she is still able to stay attentive, travel to the far reaches of my body, and sit on ROS1’s brake whenever or wherever he tries to take off in his shiny speedster. We are filled with gratitude.
I waited to see the official report on my patient portal before writing this. The report always shows up one week after my daylong appointment. But at Dana-Farber Cancer Institute we do not need to wait and worry for a week to hear the news. Here’s how Thursday, June 27 went –
We left home at 4:45 AM for the drive to Boston, arriving in time for Dan to have lunch before my first appointment. And then the fun begins:
1. Blood draw on Yawkey, floor two (two tubes for today, two bigger tubes for trial study) and IV in (for scans and MRI). When the nurse flushes out the IV, I get that taste in my mouth. I ask her how it get there so quickly, but she doesn’t really know and marvels at it with me.
2. Over and down to Dana, floor L1 to drink the nasty drink that no longer tastes so nasty – maybe because my taste buds are messed up or maybe I’m used to it now. (I take mine in water, no Crystal light lemonade for me.)
3. Dana L1 for chest CT scan and abdomen CT scan. Yup, still get that taste in my mouth and warm flush that makes you think you’re peeing. I ask the tech how that goes from your arm to everywhere else so quickly. He says he doesn’t really understand it either.
4. Across the hall for brain MRI (45 minutes wearing the hockey mask, in the tube with loud noises surrounding my head) I forget, when the technician flushes my IV, to ask about that taste arriving to my mouth so quickly. I’m sure this lady would have had an answer, but she was all business and I didn’t want to interrupt her work. I’ll have to “google” it! IV out when MRI is finished.
5. Back to Yawkey, Floor 10 for EKG. Good thing I remembered to shave my legs this time. Those sticky things come off easier with no hair. (Also good thing I’ve got no chest hair!)
6. Vitals taken (Yawkey 10). No thanks, I don’t need a kilogram to pound conversion. 97% on the O2 – Yes! Way to go little lungs! Radiation fibrosis, partially collapsed lung – you are nothing in this strong body. Must be all that hill walking to do the goat chores.
7. Appointment with clinical trial nurse and doctor. (Yawkey 10) This is where we got the great news that Loralatinib is keeping everything stable. Even though we’ve only been there five hours, and did all of the above, they had the results. My blood work report had even gone to my patient portal already. With the oncologist, fellow, and nurse, we talk about the test results and the medication side effects. Even though it is the end of their work day, they take the time to ask many questions, listen thoughtfully to my responses, and try to problem-solve any issues (ongoing or new).
8. Down to Yawkey 2 to pick up prescription.
9. Dan drives us to Seabrook, NH for the night. It is more than $100. cheaper than staying in the city, and in the summer we can do this whole trip in the daylight.
And so it goes. Until it doesn’t. I am very aware of this gift of time we’ve been given. Many with metastatic cancer do not have a specific gene fusion or mutation that researchers have found and developed a drug to target. Even when there is a TKI like I am on, the cancer often finds a workaround very quickly. The toll that the cancer and the medication take on my body is ever-present. We are always in the cancer world where words like “good” and “stable” take on a much greater meaning. But that is just how it is, and we move forward. Grateful for what we do have, what we can do. And filled with hope. Always have hope. There is always much to be hopeful about and for.
The following morning, the day we drove home in a celebratory mood, was a day much like June 28 sixteen years ago when our son and daughter-in-law were married. A beautiful sunny day, filled with hope for a wonderful future. So too was it much like a day forty-four years ago. The day Dan and I officially began our life together.
And now here I am, filled with gratitude and hope – finding joy in the everyday every day with Dan, our family, our two little dachshunds, and of course our goats.
polepole ~ breathe 