See you in September. What? Wait a minute! First, if you lived in a certain era, it’s difficult to not start singing the song. But, for me yesterday, this was both a welcome and a scary surprise.
Yesterday, we had another very long day going to Boston and back. My chauffeur was tested by wind, rain, fog, and darkness, but we had a very positive outcome with stable disease once again. Still, having been scheduled for scans and brain MRI every three months for many years (starting with every three weeks when first on lorlatinib), I was surprised when Dr. Janne suggested 6 months for my next appointment. (He quickly said we could try 5 first.) Of course it is a welcomed step. It means the Lady Lorlatinib has safely kept me from progression long enough that we might let our guard (not hers though) down a bit. It means cutting our Boston trips in half. That said, it is also scary. ROS1 is an aggressive cancer if not stomped on as Lady Lorlatinib, my miracle targeted therapy drug, does so effectively. Being checked more frequently means a better chance of catching an escape of that crazy little ROS1 before it attacks me here, there, and everywhere. He is vicious. I know. I remember. And, Dr. Janne and others have said not to count on being able to know when it’s opened the door, racing around in me like a madman. Yes, of course eventually I would have symptoms, but not perhaps as soon as one might expect or hope for. All that being said, I must be brave. I trust Dr. Janne. And, it is nice to hope for an uninterrupted summer at camp. Thoughts, prayers, fingers crossed, positive vibes – I’ll take them all.
Without SCIENCE RESEARCH I would not be here. People might say, “Oh you don’t know that.” Yes, I know it. If you are thinking, “Wait, don’t you believe you should thank God for answering our prayers, and that is why you are here?” If God’s grace is why I am here, then of course science research must be part of God’s plan. And every minute of every day I am so very grateful and try to live my life in a way that demonstrates that gratitude.
You know my story of clinical trials in which scientists study a drug’s effectiveness treating a specific disease or in my case a specific gene fusion found in only 1% of lung cancer patients. It takes years of research, brilliant research doctors, programs in which studies take place, equipment and staff to support this research, and funding to create these drugs for cancer (and of course other diseases). Cancer does not discriminate. That is one of the hardest things about our long day at Dana-Farber, seeing people from the very young to the very old who come there for their hope. People who may look fairly healthy, people who look very ill, all hoping for their miracle. Their miracle that may be in a clinical trial right now. A clinical trial that may be in jeopardy because of the Trump administration’s withdrawal of funding. (This has already happened at NIH. At Dana-Farber, Dr. Janne said they do not yet know the full impact of this, they’re trying to figure this out.) Many of those same patients may receive their health care through Medicaid or Medicare, also on the Republican/Trump/Musk chopping block. While it may seem like this is not about you, it is. If you think you don’t benefit from medical research or these forms of healthcare, I’m thinking you should think again. But, after that if you still don’t, think about your family, friends, and neighbors. Some of them certainly do. Please don’t ignore this crisis we’re in until it directly hurts you. Become informed, get involved, call your Senators and members of Congress.
If all goes well, Dan, Ruby Jean, the goats, and I will now simply enjoy the winter and spring here on our side of the mountain. Maybe I’ll even finish the “braid-in” rug I’ve worked on for a while now. (It’s curling and Ruby Jean may claim it for a bed.) Lobster gear will be worked on in the field, the boats will be readied for another season of fishing, and before you know it the boats and traps will be in the ocean, and we will be planting our garden at camp. Thank you for staying with us on this cancer journey, and thank you for your well wishes, positive vibes, love, and prayers. We feel blessed and are filled with gratitude.
polepole ~ breathe 