Help single mom fight rare pulmonary carcinoma
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I am a 50yr old single mom of 3 children whom I raise myself. 12yrs ago I went from being a normal healthy woman whom thought had food poisoning to a woman who in 3 days was in congestive heart failure fighting for my life. After several hospitals & in multiple states in a matter of a few months I was diagnosed with a rare terminal illness called Cushing's Disease & told I was a rare 2-3 out of a million. Doctors said I wouldnt live to see 38 & if so I would be in a wheelchair. I have fought so hard not to make that a reality. With this disease you usually have a tumor on your pituitary in the brain or adrenal glands. In my case they could not find the tumor so after 5 months laying in hospital dying due to excessive cortisol levels as high as 16k both adrenal glands had to be removed to stop the cortisol production in order to survive while continued search for tumor took place. I was enrolled in a government research program at The National Institute of Health in Bethesda MD where I continued to return every few months for testing & treatments after finally being dc’d from a nearly 6mo stay and still unable to find the initial cause of this horrific ordeal. Finally during one of the many return visit to NIH they not only found the tumor but several of them in the lymph nodes around the trachea & both lungs that a biopsy confirmed to be a rare stage 4 metastatic neuroendocrine carcinoma and Upon releasing me from NIH gave no referrals for an oncologist or anything. I was left helpless and scared trying to figure out what to do on my own. After researching several oncologists I found one at NY Presbyterian in NYC willing to treat me so I made the trip in hopes to be able to remove cancerous tumors & beat this horrific diagnosis. I underwent my a series of surgeries at NY Presbyterian removing cancerous lymph nodes in both lungs, bronchial, aorta and right hillier of heart. Unfortunately after removing 52 lymph nodes and 34 positive tumors from those areas the cancer continues to spread & has now spread outside the thoracic region to the pulmonary region. The cancer at this time is very aggressive and I’ve exhausted all known treatment options and due to the aggressiveness of the cancer it is triggering adrenal crisis which can be fatal if I don’t consume enough steroids daily which since the removal of my adrenal glands become my life line & The steroids I need to live are damaging my muscles & nerves as well as eating away at my bones to the point my right knee ended up being replaced as well as during a crisis I fell unconscious and completely destroyed my right foot having to have it reconstructed and due to infected hardware had a 2nd surgery to remove all hardware & not replace it leaving me with a severely damaged foot I can no longer walk normal again or without assistance and the pain is never ending. I've been diagnosed with osteoporosis and severe arthritis throughout which at some point doctors predict I will no longer to be able ambulate with the assistive devices I currently use & eventually will be confined to a wheelchair or mobility chair. NIH has given up on me stating there is nothing more they can do for me. I’m currently being treated at Vanderbilt in Nashville which is a 5 hr round trip from my home as well as being followed by my thoracic specialist at NY Presbyterian in NYC.
Despite the nightmare my life has become I am grateful to still be alive & learned how to walk with assistive devices as needed for the 2nd time in 9yrs as my health continues to deteriorate my Expenses pertaining to treatments, medications and maintenance especially after losing my secondary insurance and responsible for 20% of all medical bills and no programs to help. I’ve consulted many case workers whom tried to assist in getting me help & denied for various reasons from not the right age to they only help breast cancer or pancreatic cancer. That’s even what I was told when I lost my secondary insurance if I had breast cancer or cervical cancer I’d qualify but because I don’t have a cancer of their choice I’m forced to go without. It’s overwhelming beyond belief & so difficult to afford along with household expenses especially with inflation while social security is all I receive. The past 10yrs have exhausted my savings, maxed out several credit cards, my 401k, and forced me to sell several valuables trying to do all I can to get by & it’s never ending. Ive created several fundraisers throughout the years one I designed my own shirts not only to bring awareness to such a rare cancer so many never even heard of but to also try to raise money towards ongoing treatment expenses . I've worked so hard my entire life and in the blink of an eye it was all robbed from me. I cannot even explain how that feels. Its been a long difficult battle and I've accepted what I cant change nor control yet I continue to fight this battle. I am forever grateful to any & all who support me as I continue to fight this horrific battle and endure all the suffering despite knowing there is no cure but I'd still like to continue being a mom to my kids and continue to watch them grow reach their goals and achieve greatness.
Organizer
Dawn Mcbride
Organizer
Jackson, TN