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What Cancer Surveillance and Scanxiety Feels Like

Kim Jones

25 Appointments and Counting...

On the eve of my 4 year check-up for cancer, I rather foolishly clicked on a news video link of Virgin Atlantic Flight VS43's emergency landing in Gatwick last December. I've watched emergency landing videos before, but this is just asking for trouble around surveillance appointments, and I should have known better. As the Boeing 747-400 came down without its starboard main landing gear deployed, and with emergency vehicles lining the runway that were prepared for the worst, it was as though all of the collective fear, anxiety, and tension of the passengers on-board that aircraft found a way to channel straight through me. I could relate to this so well, because I know exactly what this feels like, and it's how I had already been feeling at the sub-conscious level. This is what I've been going through for 4 years now, over and over again, as an 'S.O.S.' cancer patient, "stranded on surveillance."

Virgin Atlantic Flight VS43, a Boeing 747-400, makes an emergency landing at Gatwick in December of 2014, without it's starboard main landing gear (outboard) after circling for hours burning off fuel.

Virgin Atlantic Flight VS43, a Boeing 747-400, makes an emergency landing at Gatwick in December of 2014, without it's starboard main landing gear (outboard) after circling for hours burning off fuel.

Nobody chooses to get on an aircraft that's going to have an in-air emergency. Who would possibly make such a decision, and how could you possibly know? Nothing like this was ever supposed to happen to you, yet there you are, settling in for your flight as the Captain comes on the PA system, announcing that there's been a landing gear malfunction, and that you might not be able to land safely. As in, we all might die. Your heart skips a beat. The words "you have cancer" are similar. All of a sudden, all that you've been working towards, and all of your hopes and dreams are, literally, up in the air. Your future, including weather you'll even have one or not, is now entirely dependent on weather you're able to get off of this plane alive or not. You're absolutely trapped and helpless, and there's not a damned thing that you can do about it.

The worst part is the waiting, circling the airport for hours while tens or even hundreds of thousands of pounds of fuel are either burned off or dumped, and the pilots exhaust every option they have trying to free the stuck landing gear. Flying around for hours reduces the weight of the aircraft as much as possible as fuel is burned off, which minimizes potential structural stress on landing, not to mention flammability. The wait is excruciating, but increases the odds of survival. Yes, survival. You could spin out of control on landing, or go up in flames. It really puts things in perspective for you when your life is on the line like this. That time spent in limbo gives you a lot of time to think about life, and what's truly important to you. It's the same for cancer survivors getting scans and blood tests done, and then having to wait forever to know the results. Back on the aircraft, the tears really start to fall when you start flipping through photos on your phone of your kids, your spouse, and your family and friends, wondering if you're going to live or die, and if you've already seen them for the last time or not. It's slow and agonizing mental torture.

Hours later, the moment of truth finally comes. You're on final approach, and emergency vehicles are ready. Either the pilots will be able to safely land the plane, or they won't. Either your scans and tests are going to come back clear, or they won't, and all you can do is pray. Feeling so helpless and out of control like this is what finally brought God into my life again, and man have I prayed. I haven't just prayed to God in these past few years as a cancer survivor, I've begged and wept so many times. "Please God, let me live for my children," I used to pray over and over again through tears. But most suddenly and unexpectedly, you hear the engines surge and you start gaining altitude? What's going on?? That familiar "dong" chimes, and the Captain comes on the PA system, terribly apologetic. "Sorry folks, but there's going to be another delay. There's a scheduling conflict - your oncologist isn't going to be in the office that day, and we need to move your appointment to next week." Ugh! But I had been spooked and finally managed to mentally prepare myself for this moment. You mean, now I'm stuck twiddling my thumbs in limbo for another week, and am going to have to go through this wretched mental process of preparing for what could potentially be my last moment all over again? F*ck me!   

This is my twenty-fifth time going through this now.* That's twenty-five emergency landings. Each time it's a a little different, but still very much the same. It gets easier with time, but is it ever really easy? We get nervous and irritable, our moods sour, our anxiety levels go through the roof, and our imaginations run wild sweating every little ache or pain. We might become withdrawn and not really want to talk to anybody, as I have now as I write this. My wife and I both recognize this all too familiar pattern by now. My emotions are being held hostage again, and I'm going to be circling the airport for quite a long time before yet another emergency landing.

"There's a zillion reasons to be having strange pains in your body, but when you've had cancer, all you can think about is that your cancer is back."

I somehow kept making it through these moments for awhile, but after my fifteenth emergency landing at the end of 2012, I completely lost it. I was so spooked and afraid, and thought for sure that this was going to be the time that I would finally go up in flames, or maybe crash into the water and drown? There were so many strange things going on with my body, along with some other bad omens in the world that had spooked me. I was fine. Extra tests that were done came back negative. There's a zillion reasons to be having strange pains in your body, but when you've had cancer, all you can think about is that your cancer is back.

US Airways Flight 1549, successfully ditched in the Hudson River in January of 2009. Imagine having to go through something like this every other month.

US Airways Flight 1549, successfully ditched in the Hudson River in January of 2009. Imagine having to go through something like this every other month.

Maybe this one was a bit like US Airways Flight 1549, when Captain "Sully" Sullenburger famously had to ditch his Airbus A320 in the freezing Hudson river in January 2009, after losing both engines to a dual bird strike. Miraculously, everyone survived, but man did I sink. That one broke me. I just couldn't go on. I was so done. I couldn't do this anymore. I just wanted to run away from life and let whatever was going to happen to me happen, but my network of supporters lifted me with their love, and carried me when I could go no further myself. I was alive and breathing, but drowning in cold and traumatic memories of all that I had been through, that I had somehow managed to keep locked away and repressed up until that point. After that time, and that landing, it all started pouring out. On my sixteenth emergency landing, two months later in February of 2013, I was so emotionally blown out from feeling so much, that I couldn't feel anything at all for awhile. I was still numb and broken. After my seventeenth emergency landing in April of 2013, I sat in my car and just cried for a half hour afterwards. I was so happy and relieved to be alive, despite the fact that this was killing me, too. I just needed this all to be over with, but knew I still had such a long ways to go, and that I would have to find better ways of dealing with this pain.

It's not my five-month long fight against cancer that's marked me and changed me as a person, but rather the repeated emotional trauma of one emergency landing after another in the years after on surveillance. Every single time, it's the same feelings of endangerment, yet having nowhere to run and nowhere to hide, and just having to wait it out. It's ironic how these rigid surveillance protocols are designed to catch recurrences of our cancers as early as possible, and give us the best chance of survival after decades of accumulated medical knowledge, yet the extreme stress that the protocols themselves bring on can kill us at the same time. Mental health issues such as post-traumatic stress and depression are common in cancer survivors, and it came as no surprise to me whatsoever that post-traumatic stress is common in airline passengers that had been involved in emergency landings as well. Sadly, even suicides were common for the first generation of young adult cancer survivors, in the absence of all of the knowledge and support that we have today in the connected world. It's always been a blessing to be alive, but it's been a hard life to live. 

The thorn in all of our sides is that we never really know if our cancers are gone or not. Passage of time without any new evidence of disease is the only thing that proves that we're cured. It's not the surveillance that kills us, but rather living with so much uncertainty all of the time, and the constant reminder of just how fragile our lives have become. We want to know that we're going to be healthy and that we'll never get sick again, but there's never been a guarantee for anybody. It's a false sense of security about life that we lose after cancer, and we never get that back again. It's been so hard learning to live without that.

"No cancer survivor should ever be left alone and without support."

A successful cancer survivorship is marked by our abilities to adapt to our new lives, to find outlets that help us cope and relieve this extreme stress, and by finding the support that we need. This can't be done alone, and no cancer survivor should ever be left alone and without support. Consciously, I know that there's little reason for me to be so afraid at 4 years out, as my surveillance appointments are mostly a formality by now. It's post-traumatic stress and my defensive instincts kicking in that's causing me to be this way, so withdrawn, irritable, and tense. It's that same feeling of dread coming back to the surface, as you approach yet another emergency landing. We can't just turn off our instincts. Oh, how much easier life could have been these past few years if there was just an 'off' switch for this, but these are hard-wired into us and they're always on, always alert, and some of us have stronger defensive instincts than others. We have to find ways to work with these defensive instincts of ours, and so I run. I run as hard as I can go at times, consequences be damned. I write, I spend plenty of time with family and friends, and never stop LIVING in between these emergency landings. Doctors and well-meaning friends will say that you'll adjust to a "new normal" after cancer. They haven't the slightest clue what they're even talking about, but this is it. Welcome home

As VS43 touched down, almost teetering on the edge of balance as the pilots delicately applied flight and then ground controls without its starboard main landing gear deployed, a passenger can be heard weeping on an in-flight video that someone took as the aircraft finally rolled to a stop. It's such a different situation, yet emotionally, exactly the same as what we go through as cancer survivors on surveillance. Who would volunteer to do this over and over again, if somehow they knew a flight was bound for trouble? They'd rightly be called a fool, a daredevil, or an adrenaline junkie not long for this world. I'm not one of these people and never have been, yet this is my life on surveillance after cancer. We endanger ourselves for real if we don't subject ourselves to this, but it can easily overwhelm and push our mental sanity far beyond our limits when we do. Going through this broke me as a person, forcing me to rebuild my life from the ground up in order to accommodate such extreme stress and pressure. Sometimes it takes everything I have to just survive, and I have to utilize every source of support and coping mechanism that I've developed just to get through some days. A well-stocked liquor cabinet, or in the galley on the plane, is your friend, too.

Here we are at last, on final approach for real this time, emergency landing cancer surveillance check #25. Some deep breathes and a final prayer said, and one last "F*ck You, Cancer!" just for good measure. What will happen this time? You just never know, and have to learn to live with the uncertainty and your life being constantly thrown up in the air like this as best you can. 100 feet, 50 feet...here we go again.  

Brace! Brace! Brace!

Steve Pake
TCAF Blog

Cross-posted at StevePake.com

* My cancer surveillance protocol by Memorial Sloan-Kettering Cancer Center for Stage IIB non-seminoma testicular cancer, treated successfully with combination EPx4 chemotherapy and the RPLND surgery, is the most aggressive (conservative) I've ever heard of. I've had H&P, blood tumor marker checks, and a chest x-ray every month for the first year, every two months for year 2, every three months for year 3, and every four months for year 4. These short intervals are what help to detect a potential recurrence as quickly as possible, which gives the patient the maximum odds of survival. It's part of why testis cancer centers of excellence like MSKCC have the highest survival rate for testicular cancer in the world. I would never even think of becoming non-compliant, but the rigors of being on such an aggressive surveillance protocol have certainly left a mark, and taken a huge emotional toll on me. 

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