Three weeks ago my oncologist's clerk called. They asked if I could make a scheduled phone appointment into an in person visit. With only two hours notice there really wasn't time to worry. I picked up the phone and called my faithful caregiver, Sandra, wondering if she would take part via phone in the consultation.
When the oncologist walked into the room, he looked at me and said, "We know what that cough is. Osimertinib has not been working at all. Your main tumour is growing and there are two new spots." Not unexpected but still a bit of a surprise.
Let me go back and give you the back story on the cough. At the end of January I had a quick checkup. The point was to make sure that I wasn't experiencing any dramatic side effects from my new drug, osimertinib. I asked for a new referral to the ENT (Ear, Nose, Throat specialist) for the annoying cough. A sudden cancellation in the specialists office moved the appointment from April to mid February. After the camera through the nose trick again, he informed me that there was nothing visibly wrong. There were some possibilities and he was going to give me a series of referrals and tests to try to get to the bottom of it. He ordered a CT scan of my sinuses which we were able to add to me previously scheduled thoracic scan.
But he also referred me to three other specialists. The first was a gastroenterologist specializing in esophageal issues primarily related to GERD. Wearing a monitor for 24 hours with a probe inserted through my nose down into my stomach to measure pH did not thrill me. But acid reflux also sounded like a good possibility.
The second referral was to a respirologist who specialized in allergies. That seemed like a bit of a long shot to me but I have always suffered from a bit of hay fever at the appropriate times of year. That too seemed like a good move.
The final referral was a bit of a surprise but now that I have had some time to absorb it is one that I have followed up on. A speech pathologist is helping me sort out if it is just habit. There are some breathing techniques to minimize its impact on my life and speech. Unfortunately this is not covered by Medicare and will be out-of-pocket.
Those cough questions are all moot now. And I'm back to Plan B from November. I will be starting chemo in the next few weeks. Good old carboplatin and pemetrexed for six cycles with a CT scan three cycles in to see if it working. This is quite like my initial treatment many moons ago with two important differences. There will be no concurrent radiation and instead of every week, there will be a three week break between infusions.
As my oncologist says, "Angus I don't expect any problems as you are very robust." Neither do I. But then we didn't expect that osimertinib wouldn't work for me either. We were both anticipating that I would get as good a run out of it as I did afatinib.
I do know that I have struggled more with this one. While my initial reaction was remarkably calm, I have had a few restless nights. The combination of still not having a date to begin treatment, despite the doctor's request to begin within two weeks. We are now four weeks out and I still don't have a date to start! Anybody with pull with an overwhelmed booking clerk and charge nurse? The cough reminds me that there are rogue cells growing in my lung. It is preying on my mind in ways that I haven't experienced before.
While I have had friends that have been on this treatment for as long as five years, I have also had friends who have died within months of beginning. All that adds up to a lot uncertainty this time. I'm grateful for the time I've had. It wasn't expected but I would like to think I have used it well.
I have warned the oncologist that I have a busy spring and summer planned. The infusion schedule will have to work around my busy social calendar. I'm still planning on attending the Hope Summit in Atlanta Georgia, at the beginning of May. I have been invited to speak at two sessions and two workshops at the World Conference on Lung Cancer in San Diego in September. And in and around all that I have my engagements with the Canadian Medical Association. Those involve attending a conference on Academic Medicine in next week. And I'm participating in planning an international conference on Physician Wellness. It's in Halifax in November and I hope to attend.
As I sat practicing with the choir on Thursday night this week, the words of the hymn "In Christ Alone" had me in tears. (They were practicing. I was listening mostly with them singing.)
No guilt in life, no fear in death,
This is the power of Christ in me
From life's first cry to final breath
Jesus commands my destiny.
I know how little command I have over my life. (I can't even get a date on a calendar from a booking clerk and a charge nurse.) I have a God who loves me though and with that love I have no fear.
Thank you for your prayers.