A few months after I was diagnosed with Stage IV metastatic lung cancer in the autumn of 2017, I read several memoirs by young authors who had themselves been diagnosed with fatal cancers. I came to the much-recommended books reluctantly; two of the authors had already died, and one was facing her mortality with such spunk and humor, I wasn't sure I could quite bounce along down that same road. Nina Riggs, whose memoir The Bright Hour is a book of extraordinarily evocative beauty, was one of the authors who had died, in her case of metastatic breast cancer. She was a poet, and as a poet, she had also mastered the lyric essay. Before writing The Bright Hour, Nina had begun a blog about her experience with breast cancer, a project she called Suspicious Country. It is an apt title, and one can see the beginnings of her book in her blog entries. Before I learned about Nina and her work, I had chosen to call my own cancer blog Sojourn & Stardust. That our blogs accidentally share a central travel metaphor is not surprising. Often those of us who experience this disease come to see ourselves as travelers, sojourners in a new and strange land. And in that land, as in any land on earth we are stardust/we are golden, to quote Joni Mitchell. And in that land, as in any other, I am grateful for your company.
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Spring/Summer 2017: It seems like a bad season for allergies and asthma. So. Much. Pollen. A long-time asthma sufferer, I notice my symptoms (wheezing, shortness of breath) are worse than usual. The nurse practitioner at my regular clinic gives me a sample corticosteroid inhaler to add to my regular albuterol. It helps, but the symptoms never completely go away.
October 2017: Still battling asthma symptoms, I go back to my GP to get a prescription for another inhaler. I also have a flu shot. The next day, I go to get a massage, and my massage therapist notices a lump just above the left clavicle in my neck, a lump which hadn't been there when I'd seen her the month before. Yikes! Could it have been a reaction to the flu shot? Not likely, since puffiness usually happens in the arm at the injection site. A friend has recently been diagnosed with lymphoma and had had a similar inflammation under her arm. I google "lymphoma," and sure enough, a supraclavicular swelling is indeed a sign of the disease. Or something else metastatic. Or infectious. Back to the doc, who orders an ultrasound, and then, after concluding there is definitely "something there" orders a CT scan. I have to wait several agonizing days for insurance approval to go lie down in a scary scan tube with a robot voice like the one calling out birth signs in the opening mass execution Carrousel scene of Logan's Run. It orders me to hold my breath. It orders me to breathe. The tech tells me she'll pray for me and sends me on my way. My GP calls to say that scan shows more trouble along my mediastinum. I can hear the kindness mixed with worry in her voice. She suspects more than she is letting on.
November 2017: My GP refers me to a pulmonologist, who, after looking at the CT scan, is pretty certain we're seeing some kind of cancer. There's lumpy adenopathy all along my mediastinum. My trachea looks like a piece of knotty wood. And while it could be caused by something infectious, it's probably not, since I don't have any accompanying fever. The pulmonologist summons a pathologist, who does a quick needle biopsy of the lump in my neck. Ouch! I leave pretty certain I'll have a lymphoma diagnosis, which is not so terrible since lymphoma is curable.
9 November 2017: The pulmonologist calls to tell me the biopsy results. Adenocarcinoma. An aggressive non-small-cell lung cancer (NSCLC). I begin to read up on lung cancer and learn about the grim survival statistics, especially for late stage lung cancer. Only about 16% of patients make it five years. If the cancer is late stage, fewer than 4% will make it that long. The world begins tilting at a very strange angle.
15 November 2017: The pulmonologist performs a bronchoscopy to harvest tissue for further analysis. Genomic testing is ordered. My "asthma"cough gets more persistent.
22 November 2017: First meeting with the oncologist. She tells me the cancer is Stage IV, incurable but treatable. We discuss treatment options, some of which would be determined by results of genetic testing. We decide to wait for the test results before making any decisions. My cough is getting worse.
Late November 2017: Additional diagnostic imaging (more scary talking tubes -- PET-Scan, brain MRI) reveals extensive adenopathy and some tumors in my lungs, but no additional metastases to other organs or in the brain. There might be one met on my pelvis, but that is not a certainty, so we'll keep watching it for changes.
5 December 2017: To harvest additional tissue for testing, I have a guided ultrasound biopsy of the lump in my neck. Double and triple ouch!
7 December 2017: My oncologist, Dr. Peacock, calls to say I have a ROS1 genetic rearrangement. It's a rare condition; only about 1% of lung cancer patients have it. I've won the late stage cancer lottery! Remarkably, there is treatment for it. Not a cure, but treatment. We discuss the possibility of an immunotherapy clinical trial versus a now standard-of-care targeted therapy, crizotinib. We decide on the latter, and she prescribes the drug, which goes by the trade name Xalkori. It's oral, self-administered, and does not cause hair loss. Average progression-free survival is 19-22 months. My insurance agrees to cover the cost, for which I am thankful, given that one month's worth of Xalkori would cost a quarter of my annual teaching salary. I am supposed to get the drug the very next day and begin treatment. But...
Emergency Surgery, YIKES!
First Line Treatment
December 2017/January 2018: Recovery from surgery. Adjusting to medication (lovenox for blood clots, Xalkori for cancer). Lots of nausea and fatigue. Cancer symptoms improve. I'm eventually able to leave off lovenox. I take sick leave from my teaching job. I rest. I read. I puke. I nap. I watch movies. Aside from venturing out for doctor's appointments and an occasional grocery run, I mostly stick close to home as the flu epidemic rages out in the world. I feel pretty crummy for awhile, and then I start feeling better.
February 2018: Feeling stronger, getting out and about little more, awaiting a new CT scan, making plans to go back to work.
14 February 2018: Happy Valentine's Day to me! New CT scan shows "marked decrease" in size of tumors and adenopathy. Lump in my neck is gone! Treatment is working!
19 February 2018: I return to my full-time community college teaching job. Hooray! Things are starting to feel normal!
March 2018: I go ahead and have a birthday. How many more will I get? I am hoping for quite a few. My breathing is much better, and overall I feel close to normal, except for icky GI side-effects from crizotinib.
Crizotinib Failure, Disease Progression, and New Medicine
May 2018: After scans showing disease progression in the lungs and metastases to the brain, my oncologist and I have to come up with a new plan, since clearly, the cancer has become resistant to crizotinib. I'm crushed because so many patients remain on crizotinib for years before they show signs of disease progression. My ride was only a few months. My oncologist begins looking into some other older TKI's like cabozantib, which were designed for other cancers but might work for ROS1. I am referred to a radiation oncologist who offers to treat the new tumors with whole brain radiation, which can cause serious cognitive impairment. I decline treatment, and with the encouragement of people in my ROS1 Facebook support group, I contact renowned ROS1 expert Dr. Alice Shaw in Boston. I fly up for a consultation with her and her partner Dr. Jessica Lin, and we decide I should enter Dr. Shaw's lorlatinib trial. The drug addresses the issue of crizotinib resistance and treats brain mets. I take my first dose on May 24 and say a prayer.
Good First Results with Lorlatinib
July 9 & 10: After a cycle and a half of lorlatinib, I have an MRI of my brain and a CT scan of my chest, abdomen, and pelvis. The scans show that the constellation of tumors in my brain has gone mostly dark, with one 2 mm tumor remaining, but stable (not growing). All tumors in my lungs have resolved. I am unbelievably grateful for this quick and dramatic response. I pray it is a durable one and that I can remain on this treatment keeping the cancer in check successfully for a long time to come.NED at Last
September 6 & 7: Four cycles of lorlatinib later, my CT and MRI show I have No Evidence of Disease. That last little tumor in my brain is gone. I am officially in remission. I am NED! I will still need to continue taking lorlatinib to keep the cancer in check, but I am so grateful to have found a treatment that has given me a better prognosis. I'll have scans every three months for surveillance, but if my results are typical of other patients who have had lasting success on this drug, I can hope for a good long ride on lorlatinib before I'll have to start looking for a new treatment. I still need to live my life day-to-day, but I feel confident making plans some months in advance.November 2018 scans: Still NED!
January 2019 scans: Still NED!
Oh No! Disease Progression
April 2019 scans: Metastatic growth in a retroperitoneal periaortic lymph node. Still waiting on a new treatment plan as of June 2019.July 2019: After much delayed treatment to a lymph node in mid July, late July scans showed the lymph node was shrinking, but there had been metastasis to the brain.
August 2019: Radiation to treat small brain mets with Cyber-Knife.
September - 2019: Infusion chemo begins, pemetrexed + carboplatin, along with continued use of lower dose of lorlatinib. A scan pre-chemo shows some progression in a lymph node, but we're hoping chemo will take care of it.
October - 2019: An MRI finds three more spots on my brain. Will treat with radiation and continue chemo combination treatment in hopes of stopping progression. Will re-evaluate this treatment plan later in the fall, depending on scan results. Stay tuned.
November 2019: Continued chemo infusions.
December 2019: Scans once again show no evidence of disease! Untethered from the chemo line just in time for Christmas. What a great gift!
March 2020: For my birthday, I had clean scans. Just in time for the coronavirus pandemic. So far, we are keeping well, and I am grateful there is no active cancer at this time.
July 2020: The good news continues. Brain MRI and CT scans are all clear.
October 2020: Clear CT scans...fingers crossed that December scans will be all good!
December 2020: Clear scans, both CT and brain MRI. Happy Christmas!
March 2021: Clear CT scans, making over a year of no progressions. Let's hope that continues with the full set of scans coming up in June, including brain MRI!
June 2021: Clear CT & MR scans!
September 2021: Clear CT scans!
December 2021: Clear CT & MRI scans. I've been promoted to brain MRIs once a year and CT scans every four months.
Continued clear scans through ALL of 2022!
By grace I have another splendid year of clear scans in 2023! I'm so grateful for the miraculous.
Wonderful news!
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