More resources… CERN Foundation

Today I would like to share another resource for everyone out there trying to understand spinal cord tumors – CERN Foundation

I first learned about the CERN Foundation because some of the other folks on the SCTA Facebook page mentioned it. The CERN Foundation focuses on one particular type of spinal tumor – ependymomas. Their site has a wealth of information about these tumors. They provide links to support and resources for people coping with ependymomas. They also help to put people in touch with research centers if they are interested in taking part in clinical trials.

 

 

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Rewired

Today I want to share a resource with others out there who are also on this journey: Rewired, a book by Dawn Standera. On Amazon, the book is described as follows:

Adults with spinal cord tumors are exceedingly rare, and written accounts of what it’s like to survive tumor-removal surgery are even more rare. Through this book, Dawn hopes to give those who are on a similar journey the reassurance that they are not alone. She not only offers a glimpse into what their post-surgical experience might be like, she also offers insights on how they might accept their body’s new language with curiosity, humor, gratitude and grace.

I bought this book after receiving my diagnosis and found that reading it helped me to not feel so alone in my diagnosis. Dawn doesn’t sugar coat any aspect of her journey, but she does, somehow, convey her optimism and her determination to not let this beat her!

I highly recommend this book to anyone with a new diagnosis (or caregivers who need some insight into what your partner is experiencing).

If you are more of a video person, you should probably check out her presentation at the following link: https://mediaplayer.mdanderson.org/video-full/F52169CD-878C-4F65-B75B-A2B73DCBA0E1

Questions for your first consultation with the doctor…

Here is a list of questions that I am compiling in preparation for my first consultation with my neurosurgeon.

  • What type of tumor do I have?
  • I’ve been told the tumor is probably benign, do you agree?
  • What is the natural course of my condition if not addressed?
  • What are my treatment options?
  • What are the treatment goals?
  • Do I need additional tests before we can decide on treatment options?
  • Which treatment option do you recommend?
  • Will the treatment eliminate the current symptoms?
  • What are the risks/side effects?
  • What are the pros/cons of beginning treatment sooner rather than waiting?
  • What should I do to prepare for treatment? Can I continue my current exercise routine? Should I add/subtract anything?
  • How long will the treatment/recovery take?
  • How long is the hospital stay?
  • How long will I be out of work?
  • If I need surgery, do you perform the whole procedure? Will students/other surgeons be doing any parts of the operation? If yes, who are they and what are their qualifications? 
  • Who else will assist you in the operation? What are their background and qualifications?
  • How long would I need to stay in Houston?
  • What is the success rate for this treatment?
  • What is the long-term outlook/prognosis for my condition?
  • What type of follow-up will I need after treatment?
  • I am thinking about going for a second opinion. Is there someone there you would recommend?
  • Can I talk to any other patients who have undergone similar treatment?

If I do need surgery:

  • What kind of pain should I expect post-op? And for how long?
  • How long will I be in the hospital?
  • Will I need to have inpatient PT/rehab following the surgery? If yes, for how long?
  • Will I be able to get adequate PT follow up when I get back home?
  • Will I need any special equipment after surgery (i.e. a back brace, a walker)?
  • How often will I need to come to Houston for follow-up care after the surgery?
  • Do you have any previously existing ties with neurosurgeons/neurologists in my area?
  • What will I do (who do I call) if I have problems after I am back home post-surgery?
  • What kind of assistance will I need during the recovery period?
  • When will I be able to drive?
  • If I have surgery to remove the tumor, what is the likelihood that I will develop another one in the future?

Can you think of anything I missed?

Here are some relate links:

https://www.spine-health.com/blog/40-questions-ask-your-surgeon-back-surgery

https://www.spine-health.com/treatment/spine-specialists/specific-questions-ask-your-spine-surgeon

http://www.hopkinsmedicine.org/healthlibrary/conditions/surgical_care/questions_to_ask_before_surgery_85,p01409

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.

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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