- You can ask as many questions as you want to your doctors.
- You can ask to talk to the radiologist who interpreted your MRI if you are confused.
- You are in control.
- Doctor's are paid by your insurance, or out of your pocket. They work for you.
- Doctors are your personal contractors.
- Respect your doctors, but they should respect you as well.
- Not all neurosurgeons/oncologists/etc. are equally capable or brilliant.
- Different regions have different views on treatment protocols.
- Don't let anyone write you off.
- Don't let anyone dictate whether or not you live or die.
- If you really want to do a specific treatment, find a way.
- There are many more options beyond surgery, radiation, chemo, and clinical trials.
- You have a choice every single moment to choose to find happiness, to find the good.
Facts
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You are so courageous the way you are facing this disease. I am concentrating on sending healing energy to you to join with that of so many others wishing for you to get well.
ReplyDeleteJess I was so touched by your story. My son was diagnosed with an aggressive gr 3 astrocytoma 4 years ago. He's 38 and doing very well. After his initial surgery July 2016, he needed a second one in Nov 2016. He's been tumor free ever since. Im an NP and I wanted to share this study with you in case it would be helpful. Prayers and blessing for you and Dan.regards, Brenda Antiproliferative efficacy of elderberries and elderflowers (Sambucus canadensis) on glioma and brain endothelial cells under normoxic and hypoxic conditions - ScienceDirect
ReplyDeletehttps://www.sciencedirect.com/science/article/abs/pii/S175646461730659X
Your story is so beautiful and hopeful. My Aunt had some super rare cancer no one survived past 4 years with, except her...that was 30 years ago. My Uncle had a rare lung cancer, no one survives it, except him, for another 40 years (he passed this Jan from Covid, sadly)My brother had multiple myeloma, 6 mos tops but he got 4 years out of that til a doctor messed up or he would have had more. I know a lot of these cases. Don't let a doctor decide when you're going to die. LOL They don't know. See the tests and decide for yourself and keep fighting for new treatments as long as your quality of life is good and you want to keep going. Trust your gut when dealing with doctors. When YOU decide it's enough, that's enough. People do survive when told they won't. And it gives the next person hope and knowledge so your blog is so crucial to them. Thanks for that. Bless you and your family and just enjoy life.
ReplyDeleteGod Bless you ... looking forward to your next post!!💕🙏🏻💕
ReplyDeleteI just watched your wedding video and was looking to see how you are doing. You are blessed to have an amazing husband. My husband is my Hero. I am in the later stages of secondary progressive MS. I have been in this war for 46 yrs. I am 66 yrs old. I still talk and walk with a cane and transpose letters and numbers but like you, Boy can I talk!! Mine is an invisible disease when I am sitting down. No one knows there is anything wrong with me when Im sitting. You hang in there Jessica. The whole world is out there. I am a Mamaw of 5 1/2 beautiful grandchildren and the luckiest woman there is except maybe you. I didn't know I had it for many years. I had to finally figure it out myself in 2012 and no one believed me enough to even run the nerve tests and MRI's. I was sent to 35 different specialists in a 10 yr span before finally, I found an article in a medical journal and took it to my PCP who had been telling each one in his notes that there was nothing wrong with me. He read it and had the gall to say, "Suzette, if you have MS, we have to hurry up and get it diagnosed." I said, "What... do... you... think... I... have... been... trying... to... do... all... of... these... years?" #35 specialist who was #5 neurologist finally listened to me as I told him all of the things that had happened since I was in college at the age of 20. 4 mths of tests and he told me there is now nothing they can do so I did my research and I am treating myself with diet, herbs and supplements. What you wrote above is almost word for word what I tell all of the new ones who are just diagnosed with MS at the age of 17 or 20 or even 60 yrs. They are scared and overwhelmed and the drs are telling them they have to do this and take that. I will try to keep up with your journey. God is so Good. I pray He will continue to bless you and your handsome husband. Suzette
ReplyDeleteAspirational couple. Hope you're both as happy as in your documentary. You both deserve to be.
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