Ependymoma

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    Amanda Van Eps

    Patient Management and Consent in a Post-Roe Era

    I was diagnosed with a brain tumor in 2020 as an incidental finding after a routine MRI for migraines during the height of the pandemic. This was not my first diagnosis with a chronic or invisible illness, but proved to be an annoying diagnosis. I say this because it came with more questions than answers. Until you have the tumor removed or biopsied, there is no way to be 100% sure exactly what it is beyond the educated guesses of your amazing medical team. In what I thought would be unrelated, I had an IUD eject itself a month or so prior to finding the tumor, so I was in the market for a new form of protection and menstrual control. Because I also have POTS, birth control has been extremely helpful in controlling some related blood pressure and migraine symptoms. While updating my OBGYN provider to get a new IUD, I was refused until I received clearance from my neurologist. The reasoning was that the hormones from birth control may or may not worsen the status of the tumor. Now while I agree it is the provider’s job to inform the patient, the patient’s consent is the only consent that matters. As if I didn’t understand the repercussions when the duality of the hormones from an unwanted pregnancy wouldn’t be just as precarious, but obviously more so. My medical history is complex and nuanced and that IUD helps manage other conditions I must deal with on a daily basis. I did not have the luxury of just managing the tumor and leaving other conditions and their symptoms to be reactive. I wrote my neurologist a light, but snarky email about how I’d rather be afflicted by the hormones of birth control than those of an unwanted pregnancy. His office faxed a letter to my OBGYN to clear me for my IUD, but the fact I had to ask him for birth control sits oddly to this day. I share my story because we are now in a post-Roe climate where patient autonomy, needs, and consent are often secondary to blanketed thought. Thirty-eight percent of American women face one or more chronic illnesses. The symptomatic nuance chronic illness places on childbearing years will never see the inside of a courtroom because justices are not qualified physicians. These blanket bans by the states will never know how to regulate exceptions, acknowledge women as whole patients, or address their patient outcomes. Now that the Supreme Court has asserted that all uterus-bearing patients no longer have the right to privacy, there is no longer a threshold or standard for patient care independent of a state’s belief systems. Risk assessments are no longer the choice of just the patient, depending on your location. Where does this leave an already complicated relationship between physicians, their patients, and the conditions they’ve vowed to treat?

    Community Voices

    Not sure why I’m posting this. Come here often, but never speak.

    I’m a cancer survivor, both Ependymoma and Sarcoma, as well as being born with a congenital heart disease - Tetrology of Fallot. I was diagnosed with depression awhile ago and given medicine for it, but found the side effects to be worse (in my case and opinion) than the depression itself. Because of my CHD I’m constantly tired, and the medicine enhanced that; while I was able to be happy, my day consisted of 4 hours at work, eating, and sleep. Nothing else - not even reading or watching the television.

    With my I don’t really get a crippling sadness, but more an emptiness or void - a negative pressure. That and a lack of interest in anything. I’m not in danger of suicide or self harm (unless a lack of caring if I get hurt during an activity counts) because the shell I built around the is stable enough that it won’t easily be broken, but my problem is that same shell is hurting me in other ways - and I’m starting to see that I have to change it. I’m terrified however that if I change so much as one piece, the rest will be sucked in and the entire structure will collapse.

    The idea is: Life has purpose so long as I improve the life of those around me. While it’s broad enough that It’s a solid block against the void, thinking about it too much has formed new layers which are starting to become a problem. For instance, if this idea is true, then I shouldn’t make others mad or hurt. Which leads to selfishness of any kind being unacceptable. Which has led to a redefining of ‘selfish’ as anything that does not prioritize others.

    It sounds good in theory, but I think in broad terms which is really bad. I shouldn’t say no to a request - any request - because it’s better that I endure any discomfort than someone else. I can’t express an opinion, because potentially arguing my point could hurt someone’s feelings. It would be selfish of me to ask anyone out as well - as both my conditions are genetic. Which means It would be wrong of me to have or even want children. It gets out of hand fast.

    Don’t misunderstand, I like who I am. At the same time though, my life is hollow. The happiest I can recall ever being was when my cat first sat on my lap of his own accord. That’s it. That’s my high-point. All because of a stupid barrier thought process which destroys the idea of “self”.

    I don’t really know why I’m writing this. Maybe I just want to complain somewhere to people who might understand and won’t freak out or panic. I haven’t really expressed an honest thought about my feelings since I was ten. I still feel guilty for all the worry I’ve put my parents through with my issues, even though I know none of it was my fault. Looking forward though, Its painful to think that my life will be forever empty and alone - a self imposed hermit who relies on others to exist. As long as that life makes other’s happy, it’s still a good one though... right?

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