Let us kill the Jabberwocky

‘Twas brillig, and the slithy toves
Did gyre and gimble in the wabe:
All mimsy were the borogoves,
And the mome raths outgrabe.

‘Beware the Jabberwock, my son!
The jaws that bite, the claws that catch!
Beware the Jubjub bird, and shun
The frumious Bandersnatch!’

He took his vorpal sword in hand:
Long time the manxome foe he sought —
So rested he by the Tumtum tree,
And stood a while in thought.

And, as in uffish thought he stood,
The Jabberwock, with eyes of flame,
Came whiffling through the tulgey wood,
And burbled as it came!

One two! One two! And through and through
The vorpal blade went snicker-snack!
He left it dead, and with its head
He went galumphing back.

‘And hast thou slain the Jabberwock?
Come to my arms, my beamish boy!
Oh frabjous day! Callooh! Callay!’
He chortled in his joy.

‘Twas brillig, and the slithy toves
Did gyre and gimble in the wabe:
All mimsy were the borogoves,
And the mome raths outgrabe.

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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.

 

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.