Spinal Cord Tumor Association

Since receiving my diagnosis, I have been desperate for information. Spinal cord tumors are rare, so there are not a lot of people to turn to for first hand information. Fortunately, I found the Facebook page of the Spinal Cord Tumor Association. This is an active group of around 2,000 supportive survivors and caregivers.

While some of the stories that people share scare me to death, I have also found some inspiration and solid advice. Right now that is what I need more than anything else.

 

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Planning for the future… talking to the boss

Being diagnosed with a spinal tumor has turned my world upside-down. Now most of  my waking minutes are consumed with research and planning. One thing that I know I need to deal with sooner rather than later is the inevitable talk with my boss.

I had been planning to wait until I had a treatment plan, but last week something happened that makes me feel that I can’t keep putting this off. We had an all day professional development retreat. On a normal day, I alternate between sedentary seated desk work and teaching (which allows me to walk around the room), but during the retreat, I spent the first three hours seated. By lunch, I was in a lot of pain/discomfort. I stood while eating my lunch, and then I took a walk before the afternoon session began. During the afternoon sessions, I tried to alternate between sitting and standing. The pain/discomfort didn’t go away, but it didn’t get worse either. I watched the clock inch closer to 4 pm… the time when I would go back home and take some medicine to reduce the pain. However, at 3 o’clock, the person organizing the retreat announced that our last activity of the day would involve physical activity. Most of the participants were pleased. They were tired of sitting in their chairs, but his description of the activity made me panic. I was already in pain. How could I possibly participate in this activity?

I told my teammates that I would not be able to participate because I’ve been having back problems. They urged me to give it a try anyway, and I had to explain that I was already in a lot of pain. I couldn’t risk it.

They let me sit out during the activity, but I felt like I had let the group down. I also felt like I was no longer a full member of the team. I didn’t have the shared experience of facing the challenge with them. And, I suddenly had been singled out a being different from the rest of the team. I noticed my boss watching from the other side of the room, and I knew that I needed to tell him what was going on before he came to his own conclusions.

So, how do you tell your boss that you have a major medical problem like a spinal tumor? Fortunately, there are resources on the web that can help.

Most of the resources are related specifically to cancer. My tumor is probably benign, but  many of the recommendations made for cancer patients also pertain to my situation. A really good resource that I have found is Cancer and Careers. They provide a wealth of information to help a newly diagnosed person decide when and how to share their diagnosis with co-workers and the boss. They also have information to help you navigate Family Medical Leave, the ADA, and your rights.

After reading everything on-line, I think I will wait and talk to my boss after my appointment with the neurosurgeon. Then I should have more information to share.

Here are some of the other resources I found:

http://www.cancerandcareers.org/en/at-work/employers-managers/managers-toolkit

http://www.everydayhealth.com/brain-tumor/telling-your-boss-about-your-brain-tumor.aspx

 

The Jabberwocky – vs – The Dissertation

For the past two years, Saturday mornings have been reserved for my dissertation. I pack up my books and head to the local library to immerse myself in research. But today something different happened. When I logged into the internet, instead of searching for more articles related to my dissertation topic, I found myself googling “schwannoma” – “neurofibroma” – “spinal cord tumor”.

Soon I found myself lost in a labyrinth of information about this thing that is taking over my life. I’ve read stories of people who have had the surgery and come out on the other side satisfied with the results, but I have also read stories that scare me. Stories of people who now realize the rest of their lives will be dictated by pain. Stories of limitations and loss. Stories of good doctors and bad doctors. So much to process. So many decisions to make. I read and read, but the big questions remain. How long will it take for me to recover? How much will this impact my job? My dissertation? My marriage? And I’ll be honest, it is hard to be optimistic and hopeful.

 

 

 

 

 

The Return of the Jabberwocky – Part II

I didn’t recognize the Jabberwocky immediately when he returned. There were big changes happening at work, and in addition to accepting a new position with much more responsibility, I was enrolled in a doctoral program as a full-time student. To say that I was busy is an understatement. I knew that I was tired all the time. I also knew that I was having back pain on and off – but the pain was minor compared to what I experienced with my migraines.

I easily ignored it at first. But with time, I started getting up from my desk more often to stretch. When I bought a new car with seat warmers, I found myself using them all the time. And I was complaining incessantly about uncomfortable chairs. There were even days when I sat on the floor during class because the seats were causing me too much discomfort. But still, the level of pain was not even close to what I’d experienced with the migraines, so it barely registered in my mind.

With the new year, I made a commitment to exercise more. I got a membership at a local gym, and I started working out a couple of nights each week. The gym had a pool, so after about a month of walking the track, I decided to give swimming a try. Two weeks passed, and I started to notice a tightness in my back. I mentioned it to my massage therapist, and she told me that it might be from muscle fatigue. She tried to release the tension, but the attention she was giving to my lower back produced more pain. When I left that session, I thought she might have somehow forced something out of alignment. Unfortunately,  I waited for the pain to subside – but it didn’t.

The next week, after swimming two laps, the pain was more than I could handle. I was halfway across the pool, and I wasn’t sure I would be able to make it to the wall. I did make it, and I tried to stretch. I thought it was a muscle cramp. Stretching didn’t help. I attempted another lap, but I had the same result.

Convinced that I had injured myself, I went to the doctor. He, in turn, sent me to physical therapy. After working with me for a few weeks, the PT told me that we really needed images. He thought some of my symptoms pointed towards a schwannoma, but those were rare and to be honest, I wasn’t suffering from some of the tale tell symptoms.

The MRI was ordered, and I really thought we would find out that I had a pinched nerve – probably from something that had slipped out of alignment. But it wasn’t going to be that simple. It was going to be something called a schwannoma… there was that word again.

I went home and tried to google it. I wanted every bit of information I could find. So I suppose this blog is going to become a way for me to sort and process the information that I find in a way that can help me make the very important decisions that I am going to have to make in the coming weeks regarding treatment.