Normal?

First I must say I’m again filled with gratitude after a day at Dana-Farber, ending with a phone appointment (on our way home) in which Dr. Janne said all is stable. And, I have finished my quarantine with no COVID. Relief.

There is NO NORMAL in Stage IV cancer. You may say that is my opinion or that I’m just having a rough day. NO. We CANNOT, we MUST NOT normalize this. Today I am filled with sadness for the family of a young mother, one of our much respected and greatly loved ROS1der co-founders. (Just a year ago a beautiful young friend died of inflammatory breast cancer.) We cannot accept that this is the NORMAL way this disease has to be. It is the current reality. This superwoman lived life fully with lung cancer for eight years. She did what so many ROS1 patients do by beginning on one targeted therapy drug, then moving to the next and the next and the next (likely some/all in clinical trial) as the disease progressed or returned in her body. With fewer than a handful of others with ROS1 cancer, she co-founded the ROS1ders. https://ros1cancer.com Extraordinary. Today I honored Tori by donating to the ROS1ders’ research fund. You can join me, helping to find treatments that can turn this disease into a manageable one, so other young ROS1der parents may live longer, better. https://ros1ders-inc.networkforgood.com/projects/117609-corinne-pert-s-fundraiser

The ROS1der goal of accelerating research is being realized, but the research is not outpacing the need for new treatments to deal with a beast that finds ways to work around each of the current treatments. And, so far it seems no targeted therapy has been developed that holds the beast at bay “forever”. (I remember when my first Dana-Farber oncologist told us I was ROS1+, that it could be treated (not cured, but treated) with a targeted therapy drug. “You mean it can stop it forever?” “No, not forever.” She went on to explain how that nasty little ROS1 eventually finds a work around.) So, not our NORMAL, but our reality.

We’ve all experienced an abnormal year since coronavirus became part of our reality. It hasn’t been a “new normal”. We’ve all known it was not NORMAL. We have coped. Some by pretending things are normal, some by facing reality. But, no one can have truly just felt like this was normal.

I am grateful for the researchers, oncologists, our family, and the prayers, well wishes, and hope of so many. It’s all kept me going for the past five years. I cannot/should not/must not NORMALize (Conforming to a standard; usual, typical, or expected) living or dying with cancer. As wonderful as it is to be well enough to find joy in the everyday every day, it is not NORMAL to take a medication (without which you likely would die within months) that causes you to need not only one, not two, but three cholesterol lowering drugs, that causes painful neuropathy in your extremities, that causes you to gain weight uncontrollably. (And those are the “manageable” side effects. Some are not tolerable, forcing discontinuation of a drug. Another reality and fear faced by cancer patients.) I know what the alternative is to my present reality. Kind of like the alternative to getting old. I’m not complaining, I understand. I’d love to live to be “old”. I hope to see the day when I declare myself old.

Yesterday I had outside visits with my sister, then my daughter and a granddaughter. Today we were visited (outside) by our son and another granddaughter. Today we went for an almost spring walk. Our plan is to get back into this routine. I picked some pussy willow twigs to add to my stick bouquet. All things I love. All things that fill my soul with joy. Everyday things. Normal? Nope, not normal, but finding joy in life despite the realities of the details.

Today, please join me in sending thoughts of strength and peace to Tori’s husband and three children. Please join me in sending thoughts of hope to all the young ROS1ders facing the fears, the realities, the costs of living with stage IV lung cancer. (I cannot imagine doing this as a young parent.) Support lung cancer research by writing to your representatives and donating if you can.

My next appointment (if all goes well) at Dana-Farber is in late May. I hope we will have our vaccinations by then. Stay safe. Love to all.

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