Life, as we all know, can change in an instant. This month has been a rollercoaster of uncertainty and unexpected turns.
As many of you know, I was looking forward to meeting cousins and connecting with relatives in England. Then I was travelling on to Barcelona to the World Lung Cancer Conference. I had an abstract accepted on the "National Action Plan for Lung Cancer." I was asked a few weeks ago to address Survivorship in Oligometastatic Lung Cancer from a patient perspective. The day before meeting with my oncologist, IASLC asked if I would participate in a patient response to one of the plenary session press briefings.
Also, that day I met with my radiologist, and he thought that travelling wouldn't be too big a problem. He did warn me about the danger of embolisms and that oxygen at altitude can be a problem. I was optimistic that my travels would still happen.
I had a thoracocentesis (A needle inserted into the pleural lining to drain liquid.)on August 15. It was done under local anesthetic. Ultrasound guided the needle insertion, and then I sat for several hours as they drained two liters of liquid from the pleural lining of my lung.
Those hopes were dashed immediately when I met with my oncologist on the 21st. "You are too unstable to travel." We discussed my treatment options. He was still waiting for the approvals for any of the options we had discussed previously ( amivantinab or Dato-DXD ), and he sent me for an X-ray to confirm what he was hearing about my lungs.
The next morning, I got a quick call to say that he was arranging for a pleural catheter to be put in. He would check back with me the following Friday and let me know about treatment going forward. I had the catheter inserted last Friday, the 29th. They took another 1400ml of liquid. But it was a very casual conversation that left me unsettled. As the surgeon was filling in the paperwork, he asked if anyone had filed for palliative care for me. I told him no, and he told me that he would cover the costs of home care for the regular catheter drainage.
It wasn't until the following day that I connected with Home Care that the full import of that hit me. I'm now a palliative patient. I spoke with a succession of nurses to organize the drainage time. In the course of one of those conversations, I had the most thorough medical history gathering that I have ever been subjected to. (And I have had a few!) The questions about functionality and pain were the most impactful.
Earlier in the week, on one of my morning walks, I had been so winded I thought I was going to have to call for an Uber. In response, I had shortened my walks to what I call my block walk. It is about a kilometer in length, and even so, I'm quite winded by the end of it. Combined with a loss of appetite, I'm feeling extremely low in energy these days.
Talking to my oncologist on Friday, I have been denied access to amivantinab as I have too many prior lines of treatment. He wasn't hopeful about the Dato-DXD - Health Canada was throwing up a roadblock, saying the company was withdrawing the drug from the Canadian market. So we agreed to start making arrangements for pemetrexed. I let him know that I wasn't that excited about it from a quality of life perspective. He gave me the impression that he wasn't that sure about it from an efficacy perspective.
About an hour later, he called back to let me know that Health Canada had approved the Dato. The remaining hurdle was the logistical arrangements. He was excited, and so am I. There is a pretty good response rate to the drug, and though the side effects aren't nothing, they are manageable.
I had my first at-home drainage on Sunday, and she managed well in the cramped space of my apartment. The nurse took another liter of liquid, as that is the greatest amount allowed in a home setting. Next appointment is Tuesday.
I'm not feeling the relief that I expected from the catheter, but with new treatment in the next ten days, I'm hopeful that my appetite and fatigue will improve.
I have mentioned before a Thomas Merton prayer that I read a few times a week. As I read it this morning, it seemed particularly encouraging. "Therefore will I trust in you always though I may seem to be lost and in the shadow of death. I will not fear, for you are ever with me, and you will never leave me to face my perils alone.
Neither do my supporters leave me alone. I am amazed at the outpouring on social media as I face these challenges.