Wild Ride

Posted on: Sat, 06/08/2024 - 21:34 By: journeyadmin
Jasper and Boltz reading Ann Lamott "Bird by Bird"


Life has had some pretty wild ups and downs over the last few weeks.

Beginning with the one of the joys though, I had the pleasure of pet sitting for a friend. I looked after their bubs (a less stigmatized name for pet rats)for a few weeks in early May while they accessed Ioboga treatment for chronic pain.(https://www.nytimes.com/2024/03/05/health/ibogaine-psychedelic-opioid-addiction.html) The bubs provided a lot of cuddles and joy in a busy time. I'm seriously tempted to look into a couple for my tiny space. I do miss having pets.

Before my second infusion I had a quick trip to Atlanta. I took a crazy red-eye flight. I changed my ticket to fly in a day early once I had my second infusion date. To get the best fare I ended up flying through Edmonton to get to Atlanta. Booking the same flight as I was originally on would have cost $1,000 more. The Scot in me can absorb a lot of discomfort for that much money.

I wasn't quite sure what to expect from this conference. Called the Lungevity Hope Summit it is a gathering of lung cancer patients. Health eMatters is also a patient-focused gathering but it is all cancers. This Summit was lung patients from across America. While the science was light, there were some good sessions. I learned that there are certifications for oncology naturopaths.  Though attendance wasn't high, the session on Small Cell Lung Cancer was useful and interesting. We don't hear much about this aggressive form of lung cancer. It was good to hear about the advances being made in treatment.

But the highlight without a doubt was running into Chris Draft again. His boosterism for the lung cancer cause seems to know no limits. I discovered that Atlanta is home for him. When he saw my name badge had "Trouble maker" on it, he pulled out his phone and started  scrolling madly. After a minute or two of searching, he turned and said, "Road trip. Meet me in the lobby in ten minutes. I'm going to get my car and I have to show you something."

Something turned out to be a wall mural of his deceased Congressman - John Lewis. John Lewis was an American civil rights leader and politician best known for leading the march that was halted by police violence on the Edmund Pettus Bridge in Selma, Alabama, in 1965. It was a landmark event in the history of the civil rights movement that became known as “Bloody Sunday.” The quote on the mural read "Don't be afraid to make noise and good trouble - necessary trouble." We talked about the importance of awareness and developing community, inclusion, calling people in rather than out. It was a message that resonated with me in many ways.

My first infusion went well. My second not so good. Well, the infusion went well. I was accompanied by a fellow patient, an old hand at this infusion. He was on it for four years after his initial treatment failed almost right away. We were enjoying ourselves. When it came time to pop the dexamethasone I did. Before the nurse had time to get water I had the two pills down. In the laughter though, I forgot my anti-emetic pill that I take to stop vomiting.

As it turned out even if I had remembered it, I wouldn't have been able to take it. The packaging was quite misleading. Despite there being five bubbles, there was only one capsule, all the rest are empty. They would have given me another medication to replace it had we noticed but it was missed.

I will spare you the details except to say about 1:00am I learned why you take an anti-emetic. I vomited violently every 15 minutes for the rest of the night. And those who know me well know that I can deal with blood and poop all day long but vomit is not my thing. At all. Indignity piled on indignity.

A phone call to the nurse line at 8:00am left me in tears when the message said, "We'll return your call before the end of the day." The relief when my phone rang five minutes later was palpable and my gratitude effusive. After making sure that I was well hydrated, she encouraged me to get and take the medication as it was long-acting. Though it would take an hour to kick in she felt sure I would feel better quickly.

My next call was to the pharmacy. I shorted all the voicemail prompts and pressed zero. The sympathetic pharmacist heard the desperation in my voice and knew the medication. She told me it would be ready in fifteen minutes. That was the time it would take me to walk over and I thought the fresh air might do me good.

It took a few days to be able to eat well again but I eventually got past the nausea. I resorted to gravol at one point. It is an old friend that I have used for most of my life for motion sickness. I have taken it down to a science. A quarter tab lets me function but takes the edge off of nausea. What possessed me to take the full tab I'm not sure, but I did sleep the afternoon away.

The whole experience left me shaken. But on the whole I'm doing well. I have the relief of dexamethasone which reduces my cough for a few days. Though on the minus side it gives me a false sense of energy and lowers my inhibitions. I'm pretty sure that is how I managed to finally book an oil change for my car and get my front brake rotors replaced. A pricey job on a twenty-five year old car that I had been putting off for several years...

My second opinion consultation still has not come through. UPS lost my notes and CD images. So I'm replacing them and trying again. My meeting with my oncologist was uneventful. He seemed pleased that there was no pneumonitis and I was in good spirits by the time I met him. I'll have another CT scan at the end of next week and that will give an indication of what is actually going on.

For my third infusion with all the medications on board, things went much more smoothly. Though the dex hiccups reappeared, they aren't the jackhammer ones I experienced six years ago with my initial treatment. The metal mouth that has come with this treatment is affecting my appetite. Once I start eating, I'm fine. Coffee tastes awful and trying to find something to get started with is the challenge.

I didn't set any records but I did manage to enjoy the Give A Breath 5K run. The funds raised go to furthering research through Lung Cancer Canada. I was asked to tell my story which I'm always happy to do. (Links at the end.)

I moved my church membership up from Blaine Grace Lutheran to Northwood United here in Surrey. It seemed like the right thing to do as it has been awhile since I have been able to get down to Blaine. I will be speaking on July 21st, Sunday morning. I'm trying to figure out what to say. It has been a long, long time since I have stood in a pulpit. Drop in if you are in the area.

The lectionary calls for a passage from my old friend Jeremiah. I have admired his vision and prophetic voice. And the Psalm is the 23rd. It is one with many fond memories attached so I'm sure I'll be able to find something while I tell my story which is the main reason I have been asked to speak.

Thanks again for all your support and the hope that you give me.

PS I have a blog post in process detailing my current challenges. Know that I'm feeling good and that I need to time to heal.

Daffodil Ball remarks - https://www.facebook.com/739304881/videos/815863137238541/

Daffodil Ball video - https://youtu.be/GtSQi7gjaTg?si=hWboSvq07OmUlOx8

Give A Breath Remarks - https://youtu.be/exLyk7YuLCo?si=LCJwJHVXhp7IkF1D