Family and friends,

I'm writing with an important update regarding my scans/cancer situation. I'll start with the headline: my cancer is stable (I still have it in numerous places, but it's not growing or spreading). As you'll recall, the nodules discovered last August that led to my recurrence diagnosis shrunk during the 5 rounds of chemo I underwent between September 2023-January 2024. I should have carried on, because that regimen requires 3 chemo infusions AFTER clear scans. I thought I had clear scans in December, but I didn't (I still don't fully understand how that miscommunication occurred), which is one reason I stopped after 5 (that and I felt awful/kept contracting infections, one of which left me hospitalized for 3 nights). My doctors felt the infection risk was too high to warrant continuing a chemo regimen that wasn't working all that well.

Because I felt so much better post-chemo, I was very happy to quit. Also, with most cases of ovarian cancer, periods of NED (no evidence of disease) (no measurable/visible cancer on scans) are welcome, but they don't usually last very long, hence my recurrence at six months. For me, this means that stable cancer feels similar to NED. In my opinion, the latter is more difficult--emotionally--because you can't help hoping that you'll be in the very small % of patients who don't recur, only recur once, or recur after long periods of NED. In a way, stable cancer is easier (for me) because it doesn't come with much hope (I'm one of those people who finds hope dangerous. I'd rather have low expectations that are exceeded than high expectations that are crushed). However, scans always cause #scanxiety, because you never know if your cancer is worsening (though you might have clues). For instance, I was 100% sure that mine was spreading/growing based on the cancer pain I began experiencing in late March/early April. It wasn't imagined or phantom, by the way, and cancer pain is distinctly different from other types of pain, so I still don't understand why I was in pain/continue to be in pain when things are stable. My doctor and I talked about it today, and he gave several explanations but acknowledges that it's confusing/hard to pin down. 

Of course, I was relieved, surprised, and extremely happy to learn that last week's scan revealed stability. I still have cancerous nodes in a number of places, but they don't appear to be growing or spreading. Stability is good! I'm pleased. Especially since a worsening case would have likely meant uprooting my life in London for a clinical trial back in the US. 

Now, an emotional update. I was over the moon about my results and delighted to spend time with my parents, who were visiting London before and after my scans. So much so that I wrote the below update (story) about my scans/#scanxiety. The story made me smile. It made me feel like my old self again. And it reminded me that I'm able to find comedy amid tragedy (sidebar: a college class called "The Comic View" impacted my philosophy about life and boosted my love of dark comedy). I was almost done when I got distracted by admin and work, and when I came back to finish it I arrived in a completely different headspace. Hence, the boring update I've written until now. I could go on and on--and I have--about the emotional rollercoaster that is cancer (and, let's be honest, life), but I don't think I have to explain it when I can demonstrate it.  Read on if you like--especially if you enjoy adventures, misadventures, trains or murder mysteries. 

***

Back in January, my parents made a plan to visit me in London in April, so they happened to be here when I had my CT scan--last Wednesday evening. However, I wasn't supposed to get my results until after they'd flown back to Texas, so I begged my team at the Royal Marsden to get the radiologist to fast-track his review of my imaging so I could be with my parents when I received the results, which I assumed would be very, very bad (I was already looking up clinical trials, for instance, and mulling over which cities I'd consider moving to for one). 

My team assured me the radiologist could do so and booked me in for a 9:15am appointment on Friday. I was elated by their assurances but also skeptical: could the notoriously slow NHS magically return scan results within a period of 40 hours? Also, my parents and I booked a deliciously delightful activity for Friday--a murder mystery train journey on the British Pullman--that departed at precisely 10:55am.

The start to our morning was disastrous and comical--something out of a Hugh Grant film. I met my parents at their hotel, where they'd ordered a taxi the night before, but the taxi didn't turn up. We desperately searched for one while I checked Uber for options, but since it was rush hour, we were at a loss. I thought about running to the appointment, which would have taken 20 minutes, or rushing home to get my car, but we didn't have time for such foolishness. At one point, I persuaded my wonderful parents to run with me towards a bus. They consented even though I was behaving like an angry maniac, but the bus we chased wasn't the one we needed. Finally, like Prince Charming in a Disney movie, a taxi appeared! We crammed inside and made it to the Marsden-- two minutes early. 

I'd already explained to the team that I had somewhere to be that morning, and they kindly respected my "need" to take a luxury train journey the same day as my scan results, because, you know, that's a good idea (I joke, I joke, but in fact it IS a good idea to pack the good and bad in like unsalted popcorn and stale candy when you're facing my outlook, because YOLO (you only live once) (to my dismay, YOLO and "bucket list" are now terms/philosophies I live by). 

So, at 9:20, the doctors called me back. My Dad came with me. Fun fact that I should have mentioned when I started this blog in 2022: he has substantial professional experience (and knowledge) in the world of cancer research, some of which is directly related to ovarian cancer. So, I needed him there to translate whatever gobbledygook the doctors had for me that day, especially since bad news would have meant rapid action/huge life decisions (e.g. where to go for a clinical trial). My favorite nurse appeared in the room while my Dad and I exchanged anxious glances to say that the radiology report was not yet finished! FUCK! I said in my head and probably aloud. How can this be? You promised the NHS would magically from from a blind, 200-year-old tortoise into an 18-year-old Olympic sprinter overnight? I knew this was impossible, but you promised!

My nurse apologized, promised constant updates, and fled the room with the speed of a renowned marathon runner. My Dad and I looked at each other with heightened anxiety (and frustration) as I checked my watch. It was now 9:35, and we had to leave the Marsden no later than 10:20 to get to Victoria Station for our critically important murder mystery train that I felt certain I could not--would not--miss even if it meant delaying the most important news of my life. I had rural vistas to enjoy and mysteries to solve! The train needed me! 

Updates came and went but were all the same: We still don't have the radiology report. We're calling the department constantly to ask when it will be ready. 

When the report still wasn't ready at 10:15, my nurse looked me in the eye with extraordinary sympathy and asked how I wanted to proceed: wait to see a doctor in person even if it meant missing the train, or go on the train and receive the news by phone. A difficult decision for anyone to make, but I knew all too well that going with number 2 meant I may not receive the news until the following Monday--after my parents had left. Marsden doctors are willing to call patients with important news, but if they don't reach you, they won't leave a message. And you can't just call back. You have to wait for their next call--if they have time to make it. We can all agree that a reasonable person, even one prone to risk-taking, would have waited to see a doctor, especially since receiving bad news is best done in person. From a doctor. Who can answer time-sensitive questions, like "Am I about to die?"

I, however, am not a reasonable person--not according to most standards, anyway. I wanted to go on that train even though I could have rebooked it for a week later, because I was SO excited about it, and I wanted to experience it with my parents, and I've spent way too much time during the last 1.5 years letting cancer rule my life and calendar. Like a child, I've learned to tell cancer NO. It's already taken so much from me. It took my reproductive organs, my hair, my dignity, my life partner, and so much more. When I decided to finish chemo early (this February), I was defiantly standing up to the beast that is cancer, telling it that I will not let it take everything from me. Life is about quality, not quantity. Living happily for four months is better than than feeling like shit for six, of this I'm certain (To be clear: these aren't my prospects. It's just an example). If you don't believe me, read
When Breath Becomes Air and Being Mortal. Scratch that. Read them whether you believe me or not, and encourage your loved ones to read them, too, especially Being Mortal, which a friend (who cares for her 87-year-old father) called life-changing. Trigger warning: if you're currently battling a terminal illness, you may not want to read them. 

Now, back to the journey of last Friday, which is, of course, part of my winding journey.

Without hesitation, I told the nurse that I was going on the train. I begged her to have my doctor call me numerous times if I didn't pick up, underscoring that I might not have coverage on the train. She nodded, but I knew she couldn't make such a promise. My parents looked at me like I was insane but respected my decision. We ran (literally) out of the hospital while I ordered an Uber. He arrived within minutes. And we had only minutes to make the train.

As soon as we closed the doors, he held up a sign saying that he's deaf. We gave him three thumbs-ups but soon found ourselves quietly debating how to communicate that we were in a HUGE hurry. He was driving as slowly as a grandmother and as politely as a Brit, though he is neither. I made my Mom scribble "We're in a hurry!" on a piece of paper, hoping he'd put the pedal to the metal. Which he did, sort of. We reached Victoria Station at 10:48 and ran once again. Side note: I ran more that day than I have in 5 years (combined). The same is true, I'm sure, of my parents. Fortunately, the British Pullman platform was next to the station entrance, and we were soon ushered onto the most beautiful train carriage you've ever seen (and I've seen a few). Champagne was poured and sweet treats doled out as actors dressed like Agatha Christie characters floated along the platform.

I, meanwhile, was sweating like a hog, so I peeled off my coat while pulling out my phone, which I placed on the linen place mat in front of me. For an hour or so, I looked at my phone every five minutes, which was unfortunate, because I was investigating the murder mystery like my life depended on it. One actor told me he and the others had me pegged for the winner, and a few told me I was "overthinking it," which couldn't have been more TRUE. My parents and I were building cobwebs cases against every character instead of using the VERY OBVIOUS clues located in a pamphlet given out before the game began. We were nevertheless CERTAIN that we'd figured it out unlike the SUCKERS sitting around us. 

And then, my phone rang. I answered it and heard the words "Royal Marsden," but the train went into a tunnel seconds later. When we emerged, the call had dropped. That was the second, and bigger, OH, FUCK of the day. 

To be continued--if I feel like it.