The Good Old Days

When I was first diagnosed, I was furious with the universe. I remember thinking it was so unfair. After three years of sacrifices while juggling my career and classwork for my doctorate, I was ready to ease back into my “real” life. I had trips to take. I had family to visit. I had friends to reconnect with. Suddenly I felt like it was all being stolen from me. All I could see in front of me was a black hole of uncertainty.

I am now one year out from the diagnosis and seven months out from the surgery, and while the anger has subsided, I still miss the good old days. I long for a time when pain was not my constant companion. I wonder what I might have done differently had I known what the future held for me. Would I have spent so many extra hours at work? Would I have put relationships on the back burner to focus on my education? Would I have travelled more? Risked more? Played more?

My old life feels like a distant memory. I think this is probably something many SCT survivors can relate to. When I heard Macklemore’s song, Good Old Days, it really resonated. I was particularly struck by the following lyrics:

Never thought we’d get old, maybe we’re still young;
Maybe you always look back and think it was better than it was.
Maybe these are the moments;
Maybe I’ve been missin’ what it’s about
Been scared of the future, thinkin’ about the past
While missin’ out on now.
We’ve come so far, I guess I’m proud
And I ain’t worried ’bout the wrinkles ’round my smile.
I’ve got some scars, I’ve been around.
I’ve felt some pain, I’ve seen some things, but I’m here now.
Those good old days… 
Those good old days.
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scar(r)ed.

This is probably one of the most beautifully hopeful posts I have seen from someone who is sharing their post surgery experiences. Since having my surgery, I have wondered at the number of people posting photos of their scars – proudly, almost defiantly – on the Spinal Cord Tumor Association Facebook page. I have even noticed that I have a fascination with my ever evolving scar. I want the world to see it. I want them to know and recognize that I am a warrior. While I spend much of my time and energy trying to live my life as if this tumor didn’t change me, the undeniable truth is that is has changed me. The scar is tangible, outward proof of the changes (emotional, psychological, and physical) that I have experienced in the past six months. And here, in this blog, is a warrior who very eloquently explains what so many of us have felt. Take a minute to read her blog, and keep rocking that scar.

aperture expanding

When I first started dating my husband Luke, I covered my mouth anytime joy tried to sneak out of the corners of my mouth. This was something I didn’t realize I had learned to do over the years, but it is something Luke caught onto right away. A few weeks into knowing each other, I received the first ever coveted “Goodnight, beautiful.” text from him. My heartbeat quickened and, unknowingly, I covered my shy smile with my left hand. Seconds later, he sent a second text saying,

“Let me guess, you’re covering your gorgeous smile and your green eyes are twinkling. Right?”

What. The. What???

Puzzled as all heck, I glanced around my apartment wondering how in the world he would have known something about me I didn’t even know about myself (also wondering if this incredible, seemingly normal man I had already known would be my husband was somehow…

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Tumors, Tears, and Twix

I promised that I would help you connect to other people who have faced a spinal cord tumor diagnosis, so here is another winner. Her blog is much more personal than mine, and her writing is fresh and fun even when talking about things that are anything but fun. She stopped posting several years ago. I can only hope that is because she is too busy out exploring the world.

A Real Pain in the Neck

I hate giving bad news. Having had training on grief counseling both in military and civilian settings, I am not a stranger to delivering bad news in my life. However, when the not-so-awesome news is about myself, I am really crappy at telling and retelling the story and delivering the information. It is kind of exhausting. Therefore, as I go on this next little adventure, I have decided to set up this website for family, friends, and anyone else who’s damn well interested about the goings-on in my life.

It all began about four years ago. (Don’t worry, I’ll try to make this as brief as possible. I hate long-ass tales of woe.) As I was serving in Kosovo during my Army deployment as a Chaplain Assistant, I began having some bad pain and weird sensations in my right arm and hand. This is very important for a soldier to…

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Grit: The Courage to Continue

The past five months have been a real challenge. Some days I don’t even know who I am because constant pain has taken over my life. But I keep showing up day after day. I keep trying to fulfill my responsibilities to the other people in my life. I keep trying to make it through each day with as much grace and as little whining as possible. That is what grit really is, and it is what the people in these photos represent. They really are an inspiration. If they can do it, so can I.

Steve McCurry's Blog

Tibet

Success is not final, failure is not fatal:
it is the courage to continue that counts.
– Winston Churchill

Nepal

Kathmandu, Nepal

Over time, grit is what separates fruitful lives from aimlessness.
– John Ortberg

Charikar, Afghanistan

Johnstown, PA, USA

Grit is not just simple elbow-grease term for rugged persistence.
It is an often invisible display of endurance that lets
you stay in an uncomfortable place, work hard to improve
upon a given interest and do it again and again.
– Sarah Lewis, PhD

Calcutta, India

Afghan Border, Peshawar, Pakistan

Afghanistan

Childhood doesn’t have to be perfect, and children don’t
have to be beautiful. From a bit of grit may grow a pearl,
and if pearl production doesn’t materialize, the outcome will
still be preferable to the shallowness of vanity.

– Laurie Graham

Java, Indonesia

Angkor Wat, Cambodia

Philippines

Porbandar, Gujarat, India

Heroes are never perfect, but they’re brave, they’re authentic,

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50/50 Movie Review

I have a confession to make. Some time between my diagnosis back in June and my surgery in December, someone told me that I really should watch this movie called “50/50”. So, I went on-line, did a little search, and a few days later the movie was sitting in my mailbox.

For those of you who are unfamiliar with the movie, the plot (which is incidentally based on the experiences of screenwriter Will Reiser) basically boils down to this –  [not sure if this description requires a spoiler alert]  – young man is having back pain, young man sees doctor, MRI reveals a schwannoma (incidentally the same type of tumor I had), young man has to deal with his diagnosis, young man has to deal with the people closest to him as they deal with his diagnosis, young man has surgery, and they live happily ever after. 

But back to my confession… you see, when I requested the movie, I was dealing with my own diagnosis, and the people closest to me were dealing with my diagnosis, and then I had the surgery, and ever since then, I have been dealing with my recovery, and… the movie has sat on my coffee table for over almost six months. So tonight, I was home alone, and the movie was sitting on the coffee table, and I slipped it in the DVD player, and I watched.

At the time, I didn’t know that the man who wrote the screenplay had actually had a spinal cord tumor (I only discovered that when I started digging around on Google after watching the movie), so I expected to be annoyed. Instead, I was surprised to see so much of my own experience portrayed on the screen. From the insensitive GP who bungles the delivery of the diagnosis to friends who are well meaning but who honestly have no idea how to help – from the feeling of numbness, to the rage and the fear – and the overwhelming sense of being utterly alone. It was all there.

I don’t know if I would like this movie if I’d seen it before my diagnosis, but I do think it is a story people who have been through a spinal cord tumor diagnosis can definitely relate to even if it does have a Disneyesque “happily ever after” ending. It might even be a good one to watch with your significant other or bff.

If you have watched the movie, would love to hear your thoughts.

** One small caveat… although the movie focuses on this Schwannoma being cancer, my understanding is that most are benign and are surgically removed without any chemotherapy or radiation.

MY INFORMAL DISCLAIMER: LET ME BEGIN BY SAYING I AM NOT A DOCTOR, NOR AM I TRAINED IN ANY MEDICAL PROFESSION. I DO NOT PRETEND TO BE AN EXPERT; I AM SIMPLY A PERSON WHO IS TRYING TO MAKE SENSE OF HER OWN EXPERIENCE. I AM SHARING WHAT I LEARN AND EXPERIENCE HERE BECAUSE I KNOW HOW LONELY THE ROAD FROM DIAGNOSIS TO RECOVERY CAN BE, AND IF I CAN HELP EVEN ONE PERSON, THE TIME I SPEND WRITING THESE WORDS WILL BE WORTH IT. 

Opioid Induced Hyperalgesia

My Informal Disclaimer: Let me begin by saying I am not a doctor, nor am I trained in any medical profession. I do not pretend to be an expert; I am simply a person who is trying to make sense of her own experience. I am sharing what I learn and experience here because I know how lonely the road from diagnosis to recovery can be, and if I can help even one person, the time I spend writing these words will be worth it. 

One theme that comes up time after time on the SCTA (Spinal Cord Tumor Association) Facebook page is pain management. Since opioid pain medications play a role in pain management, there is a lot of discussion about the proper use and distribution of these medications. While some of the members of the SCTA seem to be able to cope with the pain without opioids, there are others who report taking these medications for months or years without improvements in their pain levels. So, when I heard a report on NPR (National Public Radio) about opioid induced hyperalgesia, my curiosity was aroused.

The author of the report, Clayton Dalton, is a resident physician at Massachusetts General Hospital. In his report, he presents research that suggests long term use of opioids leads to hypersensitivity to pain. Going back to 1870, Dalton cites evidence of the pain magnification that accompanies opioid dependence. What does this mean for spinal cord tumor survivors and others with chronic pain? Well, it seems to be a clear message that the opioid based drugs that appear to be an elixir in the early days following surgery can quickly become a major part of the problem.

“This could be a major factor in the opioid crisis,” Arout says. “People have worsening pain, and so their dose is often increased because they are thought to be tolerant.” But the result is that some patients may find themselves taking dangerously high doses while their pain continues to intensify. – From Clayton Dalton’s NPR report on opioid use.

There is no doubt that spinal cord tumors (and the spinal cord injuries that often result from the surgery to remove them) cause pain. And now, this report suggests that opioids intensify that pain if taken for an extended period of time. Suddenly bells and whistles are going off in my head. This explains so many of the posts that I have read on the SCTA Facebook page. Many of the members of this page experienced pain for years before getting their diagnosis. They might have bounced from one doctor to another searching for answers, and in the interim, the puzzled doctors may have prescribed opioid medications to numb the pain. This would have been okay in the short run, but as the patients migrated from one specialist to another, days turned into weeks, weeks turned into months, and months turned into years – while well meaning doctors prescribed increasing doses of these medications thinking the patient was just developing a tolerance to the pain medication. The patient was, unfortunately, being made more sensitive to the pain they were trying to control.

Now we have large numbers of people whose years of opioid use have, according to the information in this report, lead to hypersensitivity to pain. The pain is not imagined, and they are not weak. They need alternatives to opioids that will cut through the pain and allow them to get on with their lives. What are those alternatives? Some people report that physical therapy can help. Others rely on non-opioid pain medications, massage, meditation, acupuncture, or other non-traditional treatments. For those who live in states that allow the distribution of medical marijuana, that seems to be a promising option. However, once a person has developed hypersensitivity to pain due to prolonged use of opioids, how long does it take to retrain the nerves? Are these alternatives able to stand up against heightened pain? Or are they more helpful for patients who have not experienced long term opioid use? There are so many implications and so many questions that need to be answered because SCT survivors desperately need tools to help them cope with their pain.

Hopefully, researchers are aggressively working to find answers to these questions, so people living with chronic pain can find some relief and get back to the business of enjoying a life lived without pain.

If this topic interests you, here are some articles you might enjoy:

When Opioids Make Pain Worse – National Public Radio

Treating Pain with Fewer Opioids – National Public Radio

Would be interested to hear what you have to say on this topic. I know it is something many SCT survivors have strong opinions about.