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.
Advertisements

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…

View original post 603 more words

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.

Do What You Can’t

I know… it is an advertisement, but I saw it during my first week back at work after my spinal cord tumor surgery, and I have to tell you that it really resonated with me! I was feeling so broken, so fragile, so incapable of facing the challenges that were bombarding me. Then I saw this ad and my eyes filled with tears. Do what you can’t… that is my calling for the next year as I tackle this recovery. DO WHAT YOU CAN’T.

Book Review – Walk it Off

A few weeks ago I wrote a blog announcing Ruth Marshall’s book, Walk it Off, and at the time I promised to come back with a review of the book. I finished the book in about 48 hours despite the fact that I was suffering from a spinal fluid leak that kept my reading time to short interludes, but I have waited to write this review because I was trying to figure out how far I should go in my review (not that it really matters much because I don’t have a large group of readers). Now, several weeks after completing the book, I think I have decided what I want to say about it.

First and foremost, I would like to thank Ms. Marshall for opening up and sharing her experience with the rest of us. Recovery can be a deeply personal experience, and certainly some aspects of the recovery (i.e. incontinence issues and suppositories) are more private than others, so I can say I am very grateful that she shared so candidly. As I was negotiating the early days of my own recovery, these details helped me to feel like I was not alone in my experience. From the moment she was diagnosed to the day she was discharged from rehab, I found my own experiences jumping off of the page. So I thank her for that.

However, there were also moments when I wondered who she envisioned reading the book. Adoring fans who wanted a window into her experience? Peers in the entertainment industry – so they would understand why she was no longer acting? Other people, like myself, who have also had spinal cord tumors? The world at large? Or was she, just maybe, writing it for herself? I can’t be sure. But if she was writing it for other spinal cord tumor survivors (or those who are newly diagnosed), I believe she missed the mark by repeatedly stressing her decision to not join the community of survivors. She didn’t want to connect with other people who were experiencing recovery at the same time as her. She didn’t want the advice or reassurance of people who had already made it through the early stages of recovery and were now trying to find their way in their new lives. She wasn’t trying to use her position as a public figure to call for more research into the condition or assistance for survivors less fortunate than herself. And the disdain with which she seemed to view those of us who have turned to others for support and guidance was off putting. Each time she mentioned her decision to not connect with a fellow spinal cord tumor survivor, I felt somehow insulted. So, there is that.

Another problem I had with her was her focus on being able to have sex with her husband. It is just that from where I am right now, there are so many things that are much higher priorities for me. For example, I would happily give up sex for the rest of my life to get rid of the pain and discomfort that I have been experiencing. I am fortunate because I can still walk post-op, but if I couldn’t, I am sure I would be willing to trade sex for the ability to walk. And even if I could have sex right now, would I be able to get in the mood when I am wondering if I will be able to get back to work before my Family Medical Leave runs out? Or when I am obsessing  about the bills that are rolling in, wondering how we will pay them – especially if I can’t go back to work? And then there is the worry about continued health insurance coverage since that is provided by my job. And did I mention that I will also lose my retirement because I haven’t been with my current employer for ten years. But maybe that is the difference between living in the United States and Canada? Maybe if I had a national health system I too would be able to make my sex life the focus of my recovery? I am sure the Democrats could find a way to use that. I can see the ads already – happy, smiling people from all walks of life who have obviously had serious medical conditions – they aren’t worried about going bankrupt to pay medical bills – they are just worried that the doctors won’t be able to restore their ability to achieve orgasm… but I digress.

I am grateful to anyone who is willing to share their story of recovery because those stories help me to find the courage to keep pushing forward with my own recovery, so I am grateful to Ms. Marshall. But I am also disappointed.

Walk it off…

Being diagnosed with a spinal cord tumor opened me up to an entire world I didn’t know existed before. It probably has a lot to do with google’s algorithms, but suddenly it seems like I am constantly stumbling upon more information about people who have been through surgery to get rid of a spinal cord tumor.

An excellent example is actor Ruth Marshall. You may not recognized her name immediately, but Ruth Marshall is an actor who played a mother to one of the teen characters on the television show Degrassi: The Next Generation. She has also acted in Hollywood films including Casino Jack and Dolores Claiborne.

The reason she is now appearing in this blog is that in 2012, she was diagnosed with a spinal cord tumor. Now that I have had my surgery, I can say her story reminds me how lucky I am (more details about my case coming soon). I heard her interview on the CBC (Canadian Broadcasting Company) radio. You can listen for yourself by clicking this link to What’s it like to re-learn how to run, walk, pee, and have sex? ‘Degrassi’ actor tells her story

I plan to get a copy of her book: Walk it Off

Here is a summary from the publisher:
Ruth Marshall—power mom, wife, actor, and daughter—was in great health, until one day, her feet started to tingle. She visited doctors and specialists for tests, but no one could figure out the cause of her symptoms. Was she imagining those pesky tingles? She tried to brush it off, even as she tripped over curbs and stumbled into people. Clumsiness is charming, right?

But when Ruth suddenly couldn’t feel her legs at all, she knew something was terribly wrong. Her fears were confirmed by an MRI revealing a rare tumour that had been quietly growing on her spine for more than a decade. Within days, surgery was scheduled, and after the intense eight-hour ordeal, Ruth woke up to find her legs and feet had forgotten how to do…well, everything. The question that burned in her mind was, “Will I ever walk again?”

What Ruth thought would be three days in the hospital turned into months of rehabilitation as she relearned not only how to walk, run, pee, and even have sex again, but how to better appreciate everyone around her—including her devoted husband, her two young sons, her worried parents, her sisters, her loving friends, and the caring staff at the rehab center who help her tackle her recovery head-on.

Laugh-out-loud outrageous and searingly honest, this is a memoir that not only entertains but inspires readers to put their best foot forward and walk off anything life throws their way.

I will write a review here after I have finished reading it. If any of you have read it, would love to know what you think about it.