Tynetta Defying the Diagnosis
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CANCER SUCKS! Little did I know that I would experience it. September 25th, I received a diagnosis of Stage 4 Adrenocortical Carcinoma (Adrenal Cancer) which includes a large tumor in my left abdominal region that metastasized causing numerous tumors of various sizes throughout my liver. I had a friend with me for support and to take notes. I was advised not to manage these appointments alone. Glad I listened. I heard 75% of what was said, but the rest sent me into a brief tailspin thinking of the implications of a Stage 4 cancer diagnosis.
The bills are mounting, I anticipate a hefty total before I'm in remission (insurance is not the magic bullet for this one but helps) and I haven't had the first dose of chemo! I'm not going to stress about it--I know a great provider and there's always GoFundMe to help offset the expenses. Though I resisted it. Stay tuned for that going live soon.
I'm fortunate to have a "Village". THANKS to ALL who have been on appointments, reached out after hearing this with prayers, offers to do whatever I need now and traveling from out of state to spend time with me. You know who you are. My Sisters have been “helicopter Mom’s” and I love them for it.
Defying the Diagnosis means I’m going to do just that. I remember the Medical Oncologist walking in and immediately stating "you look incredible”! because the results in the folder noting what I am supposed to look like at this Stage were not the same. It's a rare cancer. Some say I'm a "rare bird" but really! Not only did I look "normal" I am not in any significant pain. The pain I'd been experiencing for a year plus was attributed to something else--WRONG! It’s been growing for 1 ½ years and I’ve lost 25 lbs in 1 year. Thank God the Nephrologist I had caught this--though 6 months later than we should have. I'm sharing because it may help someone to be vigilant in how they manage their health and the providers who treat them.
Pay attention to medical records, get copies and read them. If you don't hear from your physician keep calling to get test results, know your insurance plan. I'm glad I don't burn any bridges. I was able to leverage a new relationship and reach high level contacts I had to gain access to top institutions familiar with adrenal cancer.
I'm sharing and I'm sure it will be questioned, but I have hopes of helping others. I've already met someone who is concerned about her adrenal glands. More research is needed for rare cancers. I will be a LOUD voice for those with rare cancers and need help navigating healthcare. I'll keep you abreast of my journey as I can. I hope to start chemo in the next 2 weeks at Mayo Clinic; interim care at Penn Medicine. This can be treated but not cured. A big hair chop is coming, so don't be shocked when you see me. I won't be able to accept visitors all the time, respond to all calls or talk to each of you as you know I'd love to do, but I ask for prayers. I know my healer and plenty is on the vision board.
The bills are mounting, I anticipate a hefty total before I'm in remission (insurance is not the magic bullet for this one but helps) and I haven't had the first dose of chemo! I'm not going to stress about it--I know a great provider and there's always GoFundMe to help offset the expenses. Though I resisted it. Stay tuned for that going live soon.
I'm fortunate to have a "Village". THANKS to ALL who have been on appointments, reached out after hearing this with prayers, offers to do whatever I need now and traveling from out of state to spend time with me. You know who you are. My Sisters have been “helicopter Mom’s” and I love them for it.
Defying the Diagnosis means I’m going to do just that. I remember the Medical Oncologist walking in and immediately stating "you look incredible”! because the results in the folder noting what I am supposed to look like at this Stage were not the same. It's a rare cancer. Some say I'm a "rare bird" but really! Not only did I look "normal" I am not in any significant pain. The pain I'd been experiencing for a year plus was attributed to something else--WRONG! It’s been growing for 1 ½ years and I’ve lost 25 lbs in 1 year. Thank God the Nephrologist I had caught this--though 6 months later than we should have. I'm sharing because it may help someone to be vigilant in how they manage their health and the providers who treat them.
Pay attention to medical records, get copies and read them. If you don't hear from your physician keep calling to get test results, know your insurance plan. I'm glad I don't burn any bridges. I was able to leverage a new relationship and reach high level contacts I had to gain access to top institutions familiar with adrenal cancer.
I'm sharing and I'm sure it will be questioned, but I have hopes of helping others. I've already met someone who is concerned about her adrenal glands. More research is needed for rare cancers. I will be a LOUD voice for those with rare cancers and need help navigating healthcare. I'll keep you abreast of my journey as I can. I hope to start chemo in the next 2 weeks at Mayo Clinic; interim care at Penn Medicine. This can be treated but not cured. A big hair chop is coming, so don't be shocked when you see me. I won't be able to accept visitors all the time, respond to all calls or talk to each of you as you know I'd love to do, but I ask for prayers. I know my healer and plenty is on the vision board.
Organizer
Tynetta T Brown
Organizer
Wilmington, DE
