btw in case you couldn’t tell, my oncology/pain mgmt nurse is in fact.. the BEST.
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And today I was super extra grateful for her because she actually listens to me and kind of.. hears the stuff I DON’T say.
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Which is why I’m now working with a social worker, and why I’m seeing the pain guy tomorrow instead of next month.
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So yeah. Thank you Lord for Kelly.
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Also, my oncologist seemed genuinely surprised at the level of pain I’m in which was a little frustrating. It was also frustrating to have her say that like 99% of people see the neuropathy get better and/or go away post chemo. Because #1: i know that’s not true, and #2: that (inaccurate statistic) makes me feel WORSE not better.
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The stats are actually closer to 30-40% see post-chemo neuropathy as a long-term or semi-permanent issue. (at least from the reading and research I’ve been doing). And it seems to be especially prevalent amongst gynecological cancer survivors for some reason.
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In stats… that’s WELLL above the significance point. So telling me that for 99% of people it goes away- just makes me feel worse- even though I know it’s not true. Maybe in your practice it’s rare, but statistically speaking that’s inaccurate.
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Also, she kept talking about exercising, which is the point at which I finally started crying and flat out said, “Dr. Kehoe- I exist at an 8. 24 hours a day, 7 days a week. I’m not worrying about exercising. I’m worrying about EXISTING. I haven’t looked into a gym. I haven’t looked into an elliptical. I struggle to get through my DAY.”
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And I think that’s when she kind of got it finally. It’s the only time she and I have ever really not been on the same page since I first saw her last year. Ever. So it was kind of frustrating. Like I get where she’s coming from- bigger bodies do produce more estrogen (science fact), and because my Cancer was hormonal, it is in my best interest to be mindful of that. But after years of targeted self-hatred, I have to temper that with not making my body a target again. I don’t just sit on my ass and eat. I eat healthfully, I don’t overeat… in truth- I’m a once or twice a day eater at this point. Pain doesn’t exactly spur my apetite. (And I am slowly but surely losing weight. Not necessarily on purpose… it’s just happening.)
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But setting up a regular exercise routine isn’t my primary concern right now either. Right now I have to figure out how to navigate my daily life without literally crumbling from the physical pain. If we can figure out how to do that- then I would LOVE to walk more. Or swim. Or something. My priority right now is physical existence.
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The only time Dr. K has ever seen me break down like that- was after my emergency D&C, so I think that sort of hit her finally just how bad things really are right now for me.
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After we talked about it, she said she also wants to run some more extensive blood work too- just to make sure there isn’t something their missing that could be contributing to the pain. She’s really concerned that the pain is getting WORSE. Because it has gotten worse. Anyone who has been seeing this progress can see that in the last few months it has been getting worse. It seems to have leveled off in the last month, but since December when it went from mostly a night-time issue to an all the time issue, it started to get increasingly more painful.
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So I’m glad about that, I don’t know that anything will show up there, but it’s good that she wants to be involved and be thorough.
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We’ll see. But anyway, thanks to Kelly tomorrow I see Dr. M again, and hopefully I’ll have an idea of the actual schedule for the blowfish thing so when I go back after spring break I can talk to the disabilities office and they can help me navigate with my T/TH guy for the time off from class I’ll need etc.
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Plus, I’ll be getting connected with a psychologist at the Cancer center which I think I really need right now too.
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