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When You Move, Your Brain Tumor Comes With You

Moving with a health problem comes with the logistical challenge of finding resources in a new place which is a task conquered through patience, kindness and a lot of organization.
PUBLISHED August 23, 2017
Samira Rajabi was diagnosed with a vestibular schwannoma, also known as an acoustic neuroma in 2012. She has had ten surgeries to deal with her tumor and its various side effects. She writes a blog about her life, surgeries, recovery and experiences at LivingWithHerbert.com. She is currently a post-doctoral fellow at the Center for Advanced Research in Global Communication at the University of Pennsylvania, where she studies media studies. In her spare time she plays with her two pups and spends time with her husband exploring Philadelphia.
I just moved to Philadelphia with my new husband after what has been a busy and joyful, whirlwind of a summer. Despite having a loyal, strong and committed partner in my husband, I was a bit overwhelmed leaving the comfort of my family and friends, who in the past few years, have been more than just family and friends to me. They have been caretakers, comfort-givers and heroes. I was nervous about the possibility of a return of my tumor or its litany of side effects as I sat on the opposite side of the country from my medical team. More than anything, I didn’t want to be a burden on my husband, regardless of his strength. I wanted our cross-country move to be a moment where I could watch him thrive rather than be forced to take care of me in the event of a medical mishap. I placed an insurmountable pressure on myself to appear normal in a way any person who has undergone brain surgery cannot.

In the two weeks since our rather haphazard arrival to the city, I have learned that I am quite a bit more capable than I thought, that there is no use pretending to be perfect, and that it is OK to rely on the person you’ve committed your life to – just as you expect them to rely on you. I have also learned that I need my six-month MRI. That six months sneaks up on you rather quickly, and changing your insurance with a new job is not fast, easy or helpful when you need an MRI as soon as possible. Due to a combination of my own neuroses and the time it takes to get insurance papers through, I have opted to keep my previous insurance until after my MRI is complete in order to make sure I get the test in a timely manner. I did, however, underestimate the challenges of ordering an MRI from a doctor out of state, getting it with “out of state” insurance, and articulating what I need and how to new people in a new place. For example, a process as simple as scheduling became the following conversation:

“Yes ma’am where do you want to do your MRI?” the scheduler asked.

“Can you tell me about the locations, please?”

“We have a lot of locations, did you really want me to tell you about them all?” She replied.

“Well, I work at the University of Pennsylvania, can you tell me which would be closest to my work?”

“We have lots of locations by your work, did you really want me to explain them to you?” She retorted with the tone of annoyance growing.

“Sorry ma’am, I just couldn’t find the radiology locations very clearly online and didn’t know if I could pick any of them or if I had to choose between a few. I’ll take the closest one!” I replied trying my best to be friendly.

“So then, where did you want to get your MRI?” she said.

I could feel her itching to get off of the phone and all I wanted to do was let her, but I needed her help as I had been navigating a maze of websites and 1-800 numbers all morning. I felt helpless and a bit dejected after multiple conversations like this, they weren’t unfriendly, and they weren’t even that bad, they were just like walking up a hill that has a slow, growing incline that never seems to stop.

I think part of my difficulty was that the people on the other side of the call are not thinking about my MRI the way I am thinking of my MRI. For me, the MRI is a test that changes the course of the days, months and weeks that follow it, or it is a test that has the power to leave those days unscathed by the sterile halls of a hospital, the painful prick of IV needles, and the scratchy ICU blankets that have been washed too many times. For the people on the other side of the call, they are doing their job. They are dealing with yet another patient, and they don’t know that that patient is a newlywed, in a new city, starting a new job, so full of hope for now and for a future, and this call leads to the test that lets that patient know if they can keep going or if they have to take a pause. I don’t blame the people on the other side of the call for their indifference to my circumstance. If they took on the narratives that come with every patient, they’d be inundated and unable to perform the basic tasks of their job. It doesn’t make it easier on me to know that, though.

So I good-naturedly explained what I need from each new person I call, and I try to practice patience with them as they gruffly tell me that they don’t know or can’t help me. I try to be patient even when I feel that the truth of it is that they simply don’t want to help, because it’s complicated and I’m sure that their life includes joys, challenges, triumphs and failures that make the distraction of a day job frustrating and exhausting. And I try to remember that I am powerful beyond measure, and that I survived the process so far and I will survive the administrative fatigue and mental and emotional challenge of another MRI. I try to remember that though much of my support system is far, they are not gone, and I try to be present with my work, my day-to-day and my partner in this and in all things. Those things are what keep me afloat, they keep me going and they allow me to push through my fear. Recurrence will always be there, lingering in the back of my mind, so I let it camp out, and I build a barrier around it so I can set it aside, and set out to explore my new home.
 
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