Retrospective: Month Three

I thought this would be a good time to reflect on my recovery and to remind myself how far I have come in a relatively short period of time. These are posts from my CaringBridge site. I set it up prior to my surgery to help me communicate with my friends/family. Hope this is of some help to those of you who are just beginning this journey.

February 15

Week nine post-op report:
It is hard to believe my surgery on December 13 was only nine weeks ago. It seems like it was a lifetime ago. For those of you who don’t know, the surgery was to remove a tumor that was growing on my spinal cord. It was causing neurological damage that would have eventually left me paralyzed. The goal of the surgery was to remove the tumor while causing as little damage to the spinal cord as possible. The hope was to be no worse off after the surgery than I was before the surgery.

In the days immediately following surgery, just moving in bed was a challenge. With the help of my physical therapists I managed to get out of bed and using a walker, I made a victory lap around the nurses’ station. But it was clear that I still had neurological issues in my left leg/foot. For eight days I stayed in the hospital, getting stronger and learning to adjust to the restrictions the doctors put on my movement… no bending, lifting or twisting.

Since then I have contended with a cerebral spinal fluid leak, neurological pain, banding, muscle spasms, restrictions on my movement, and a host of other issues. Some of the pain and discomfort I am dealing with has improved with physical therapy, but I will probably continue to have muscular/neurological issues for quite some time. Fortunately, despite the discomfort, it seems I will eventually be able to regain most of my physical abilities. I am walking well (though I still lack confidence when walking due to persistent balance issues), and I am hopeful that the bending, lifting, twisting restrictions will be removed at the end of March.

I am still spending about 3-4 hours daily doing my exercises, stretches, and massages as part of my physical therapy, and I am going to start driving short distances. I still have a lot of pain/discomfort when sitting, so sitting in a car is like torture, but I have to do it to get back to my normal life/routine. I will also start transitioning back to work. I am going to work four hours a day from February 19-March 1. That will allow me to continue with my intense physical therapy schedule.

Wish me luck as I enter this new phase of my recovery!

 

February 18

This is what recovery looks like. Still have a long road ahead of me, but I am making progress. Top left chart is my daily runs before my surgery. Then there are three in the bottom row from the weeks immediately following surgery showing my daily walks. Finally you have my daily walks this past week.

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March 1

Week eleven post-op report:
Tomorrow will be my first full day back at work. This recovery is the most difficult obstacle I have faced in my life. I am trying to stay positive and draw inspiration from any possible source. Here is my quote for tomorrow – “Success is not final, failure is not fatal: it is the courage to continue that counts.” – Winston Churchill

March 10

Week twelve post-op report:
This week’s milestone was my first day back in the classroom since the surgery. Between the killer commute and the unrelenting pain/discomfort, this has not been easy. However, I have been surrounded by amazing people who are cheering me on and encouraging me when I feel like I can’t keep going. A special shout out to all the people at work who have made me feel the love the past two weeks with your flowers, chocolates, donuts, messages, smiles, hugs, and positive energy! You have no idea how much your encouragement means to me! Thank you!

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Tame the Beast

Pain is one of the biggest complaints that I hear from other SCT survivors. I know it has been my greatest challenge. This video does a great job of explaining persistent pain.

Explain Pain Author on YouTube

In my last post I wrote about a book that my physical therapist asked me to read. Since then, I have been trying to find out more about the authors and their approach to pain. I found this video to be both informative and entertaining. If you have a few minutes to spare, you might give it a go.

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.

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.

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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