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Site created on October 31, 2019
In 2014, I went to my local emergency room because I wasn't feeling well. After a CT scan, the ER doctor informed me that they had discovered an ovarian cyst the size of basketball; I was transferred to Duke and waited to go into surgery. After 6 days, I was finally wheeled into the OR; it took a team of 6 doctors 4 hours to drain and remove the cyst, and then, the right ovary, and Fallopian tube. During the surgery, they also removed cysts off my left ovary and sent them in for a biopsy. The office called me back and informed me that the cysts came back positive for ovarian cancer. That phone call, changed my life in more ways than I can count, and what has followed since has been 5.5 years of frustration, anger, and hope. In August of 2019, I reached 5 years of NED, which means that the odds for re-occurence have decreased significantly! I'm very excited to be sharing this part of my journey with you all!
Due to my own experiences with doctors, nurses, medical professionals, and researchers, I have chosen to dedicate a large part of my time and energy to patient advocacy. One of the ways I'm able to do that is through Teal Toes. I am the Executive Director of this amazing organization; our goal is to create conversations and awareness about ovarian cancer. You can learn more about us here: tealtoes.org.
Please note: This is a personal blog and is not a reflection of the views of Teal Toes as an organization. I have approved the use of co-authors, so I may not always be the person using and/or updating this blog.
The accounts noted above are personal and are not associated with Teal Toes. Assistance you send to me will go to helping me pay for gas to get to and from my medical appointments (I average about 3 a week, and 75% of my doctors are at least an hour away), co-pays for the specialists that I see, and/or meals when I have to travel long distances for appointments. If you have any questions or concerns about how your donation will be used, you're more than welcome to email me to discuss them. Thank you so very much!
Lots has been happening, lately, and I'm trying to be better at updating here. Thanks for being so patient and understanding, friends!
To start off, I have some feelings about the Duke Health system: I am absolutely done with them.
This is the 2nd specialist that found that out my case is more complicated they assumed, and is just cutting me off from the kind care I actually need and deserve.
Now, he just wants to find this autoimmune disorder (Wegener's granulomatosis), keep checking my nose, & not prescribe pain medication. He put me on something to help address nerve pain, but it takes weeks to get in your system (he knew this), and was unwilling to accommodate with additional pain medication until that happened.
So, I'm still having migraines. The pain is always above 6. Usually an 8 or 9; sometimes a 7 if it's a good day. And, I didn't notice any difference from the nerve pain meds he put me on, so I messaged him and told him that. He upped the dosage, and at our last appointment, told me that I should find a neurologist and he would refer me.
At that appointment he checked my nose. It was already inflamed heavily despite continued use of steroid nasal rinses twice a day. They also found a pretty big polyp on one side, too, that had just developed in that short time.
The ENT's summary: he still thinks I have an autoimmune disorder (even though my blood work came back fine last time), and that I really do think I have Wegners, and the symptoms I'm having are consistent with those diagnosed.
I just hope that they find it soon because he won't prescribe anymore antibiotics (I've been on them for YEARS now trying to get rid of this infection, and they just can't).
I also can't be on prednisone because it will elevate my WBC count, and I have to be off of steroids long enough before they run blood tests again (which will happen the week of the Harvest Feast)....
So, I found a neurologist not 2 minutes from my house. I saw her last Tuesday. She was actually pretty appalled that the Duke ENT hadn't scheduled a brain MRI with all of this happening.
And then she noticed the nerve pain medication he prescribed for me....
"He knows you had bariatric surgery?"
"Okay. I'm assuming you're still trying to lose weight, then, since you're not even 2 years out of surgery?"
"Well, it was quite cruel of him to put you on this medication....and this dosage is...incredibly high. You could easily gain 50lbs from this...."
After some frustrating interactions with the ENT, it seems quite clear that all he has been truly concerned about was taking me off the Vicodin. He didn't even take the time review my file and look at my health concerns. He's been asking me to continue to rotate NSAIDS despite the fact that I'm not supposed to take those. He knows I've had issues with my liver before (and if I have Wegners, this will be even more of a concern, now).
The neurologist took me off of those, and gave me an injection that I will be giving to myself every month to help address the migraines; if that doesn't work, she will schedule me for botox every 3 months. She also upped the dose of Imitrex he was giving me, and I've noticed such a difference.....but I'm having to use it a lot because I'm getting migraines every day, and this box only had 10 in them. I need like 40 of those boxes. lol. She also gave me a supplement to start, so I've incorporated that into my daily medications. She also wants me to start removing good tasting things from my diet--like chocolate, red wine, wheat, caffeine, and diary products.
I have some appointments with other specialists to rule things out, which I'm expecting to go well. Hopefully, I'll have some good news to come back and share with you all soon.
But, I will say that when I told her that the ENT thought I had an autoimmune disorder, she said "He thinks you have Wegners?"
And that was kind of comforting because I think she really looked at my history and what's been happening, and sees that this is real possibility.
Anyway, everything is still up in the air, friends. I know I'm still halfway present, and it's simply because when I get these, I can't look at screens at all--it's too painful + triggering.
I hope you're all doing. Thank you for reading and catching up. Thank you for your continued support and love.