Rich and I spent many weekends when we were dating going to movies. Before the phenomenon of Star Wars, there were those double features where we paid one price and saw two movies. You could stay in the theater all day. There were no recliners and no reserved seats. The house didn’t clear out completely before the previews began again. Parents could and would drop their kids off in the morning with a stipend to watch movies and grab snacks before they were picked up in time for dinner.
Twin theaters were just beginning to pop up on Long Island, but more often than not, we went to a theater that had a simple marquee. A double feature or a midnight showing of a cult movie. Screens were wide and balconies were massive.
As this was also the days before digital cameras and unlimited selfies, instead of taking photos, I had a scrapbook. In it would be ephemera of places we’d been; napkins, programs, announcements in the paper. Also in there were the simple ticket stubs from the many movies we’d go to. Carefully would I write the date and movie name and stick it into my book. And so many of these movies were by Mel Brooks.
As our kids grew, we enjoyed introducing them to the pantheon of Brooks. Part of our trip to San Francisco found us under the Golden Gate Bridge where the telephone booth of High Anxiety was set. This homage to Hitchcock is part of our lives, as truly all the Mel Brooks canon, and the laughter they bring is healing.
We’ve likened our stay in the stem cell unit to moments from Young Frankenstein. As Rich put on his compression socks when we went to Iceland, he sang from Men in Tights. But lately, lately we’ve been feeling a bit High Anxiety.
High anxiety … it’s always the same;
High anxiety … it’s you that I blame.
It’s very clear to me I’ve got to give in.
High anxiety: you win.
Not so fast….
The PET scan in the early spring gave me a touch of nervousness that we usually don’t come across because of all the oddness we’ve been experiencing for months. We let that go when we received news that it was all good. Begone scanxiety!
Then Rich went to have a physical for scout camp with our grandson and blood work was done. When our general practitioner called back, he told us to contact our team at North Shore. There was a rise in Rich’s LDH… a marker for Lymphoma. Coupled with night sweats, weight loss, fatigue… it doesn’t look good. All indicators point to “it’s back”… our hearts sunk. The doctor doesn’t say this directly, but it’s inferred. For the first time in this entire journey we started in 2003, Rich shook his head and said “Why me?”
This isn’t where we were planning on being… we’re nearing that five-year mark… it’s time for normal to be in our sights! We’re. So. Close.
“Key Change!” as Mel would sing.
We touch base with our stem cell guru, send her the blood results and ultimately we’re advised to wait a few weeks and come in for another panel to see which way the wind is blowing. Rich’s numbers are within the high normal, but no one likes the trend upwards. Everyone hopes to see a different direction in a few weeks. There are a number of reasons for a raised LDH. Cancer is one but also some damage to the kidneys or liver… and our guy has not been following protocol to the letter as of late.
Waiting. We suck at waiting.
However, in the meantime Rich is approved and scheduled for his sleep study. With a small backpack of toiletries and overnight clothes, he spends the night wired up to track his every movement from the smallest breath to the largest leg movement. Heart, brain, lung, blood oxygen as well as the arm and leg movements and breathing patterns are all collected from 8pm to 5am through a variety of monitor pads stuck here, there and everywhere. As one would expect, not the best night’s sleep.
And now we wait for the results. We get no better at waiting.
And since we are so bad at waiting, we nudge the clock a bit and go for blood work a little earlier than advised. And, again we wait.
The results come back with a dip down on the LDH. There some other numbers that make us nervous, but we’re told to leave those alone and to come back in a few months. Watch and wait. The stem cell guru is not concerned. But then again, she isn’t living our life.
We take a deep breath and move on. Breathing.
We get back the results of the sleep test and it appears Rich’s brain forgoes the reminder to breath; centralized apnea. And while he sleeps, he pauses. Long pauses of breathing. Concerning pauses of breathing. In the course of an hour, he pauses 29.7 times on average… basically half the time. No wonder he’s so fatigued! Coupled with centralized apnea is the suspicion of obstructive apnea as well. This combination is not as rare as we thought.
There is a brief respite of tests while Rich goes to summer scout camp with our Boober and back to his happy place within the scouting community and in the woods. He pushes himself to test his abilities knowing there are people who will keep an eye out for distress on those hikes with inclines. Knowing too that he has his loop monitor to record any heart issues that may occur. He strikes a balance and for the first time in over five years, he sleeps in our tent again; this time with his grandson at his side. When needed, he can and does grab a ride to a campsite or activity area. He’s learning to strike a balance between moderation and pushing through. And it works. He comes back energized but understandably tired… but it is a good kind of tired.
He’s back only a couple of days and he is scheduled for another sleep test. This time to determine what type of machine will work best for his apnea which his records show is a combination of obstructive and central… CPAP or BiPAP. Both use positive air pressure, but the CPAP uses continuous steady pressure during inhale and exhale. The BiPAP, which Rich has had in the ER when he was badly desatting, has the ability to be set to a dual setting so that the inhale and exhale can have a different setting with generally the inhale being more forceful. BiPAP is helpful when the lungs need a break as they did for Rich when he had RSV by giving a little extra support.
But the overall idea is to give Rich the best night sleep whether his brain is paying attention or not. And that good night sleep will help his heart heal. The data is being analyzed. And so, we wait.
We do find that the loop monitor has taken some of the caution from any exercise or tasks that previously made us nervous… we have that little gizmo to keep an eye on any issues that may arise. The promise of a better night’s sleep gives hope of additional energy and to take advantage of the monitoring’s watchful eye and further free Rich from fatigue.
Sure, we figure that there will be moments, as Brophy would say “I got it. I got it. I got it. I ain’t got it.” But we intend those to become fewer and farther between.
And to help us through those “I ain’t got it” moments, to keep ourselves out of the Psychoneurotic Institute for the Very, Very Nervous and the care of Nurse Diesel, we’re finding new ways to move past those moments instead of trying to fight against it and waste our energy. We’ve done well in the past to avoid the anxiety of these routine follow-up tests. It’s time to get back on track and put it behind us… time to let our hearts soar, once more!
High anxiety whenever you’re near –
High anxiety – it’s you that I fear.
My heart’s afraid to fly – it’s crashed before …
But then you take my hand;
My heart starts to soar once more.