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Misdiagnosed and it ended up worse 😭

Story

It all started with a development of allergies 3 years ago. I started feeling not me. The doctor prescribed nasal sprays, these did nothing to help, before the first year was up I couldn’t breathe through my nose and found myself stopping and needing to catch my breath. It wasn’t uncommon for me to turn to who I was with and say “hold on I can’t breathe”, or get scared because I was alone and couldn’t catch my breath. The doctor ordered stronger steroid nasal sprays and then the cough developed, so the added an inhaler. During this time my mother had a stroke and thank God for the miracle of a tPA, but I did quit my job and moved up with my mother to help her recover and be with her through an operation for a clotted artery, which was resolved wonderfully! With mom in great recovery, I was starting to lose weight, but living on property and gardening more then I ever had might have been why. I was also working hard outside building sheds and doing house repairs. So when I started seeing blood in my stools my doctor passed it off as hemorrhoids. I saw an ad about using too many steroid sprays and went to UC Davis to participate in a clinical study. The researchers found a large tumor in my sinus on a CAT scan, my doctor had never even looked up my nose to see the cavity was completely blocked. So I couldn’t participate in the clinical trial, sent back to my primary physician and then to an ENT specialist. He ran a full round of blood test and scheduled a surgery. I had unusually high RBC’s but cleared for surgery and had a thumb sized tumor cut out that was so large it needed to be dropped it down my throat to pull out. Biopsy came back benign! I was breathing through my nose and thought I was in the clear. Then the blood starting showing up more in my stool, fresh red with mucus. With the extremely high red blood cell count, and my abdomen had started bloating and my doctor thought my spleen may be leaking and sent me to an oncologist fearing Polycythemia Vera. Quickly that oncologist summed up I didn’t have PV but the CT scan she had taken showed some spots of diverticulitis in my abdomen and scheduled a follow up in two months. Thankfully the colorguard test I had been asking for since the beginning was finally ordered and showed up. A week later I had a 99.9% positive for colorectal cancer. My primary tried sending me to local gastroenterologist who one couldn’t get me in for 4 months the other no longer took Medi cal which thankfully I had since I hadn’t worked in a year with everything happening. I wrote my primary doctor an email that I had been rectally bleeding for almost a year, had high RBC’s and had a positive colorguard and this needed immediate attention! I got a call from her office and they found a gastroenterologist at Stanford who excepts Medi cal and within weeks I had a colonoscopy and endoscopy and a great doctor who had a diagnosis! As much as it really was awful to know, I was I so glad to finally know what I was facing and could get the treatment I needed! Within weeks I had several specialist and about 6 MrI’s and extensive PET scans and I’ve been diagnosed with T3 rectally cancer. But it doesn’t stop there, I have a cyst on my pituitary gland and leaking cerebrospinal fluid. The tumor has started to regrow in my nasal cavity, which taking out the first tumor is where the damage to the pituitary happened in the first place. And they also found a pretty serious ulcer in my duodenum. But now, I am on a path back to health! It’s been scary, sad, really hard on my family. My daughter and her husband moved me in and she has taken a leave from work and has been dedicated to kicking cancers butt! She has been so dedicated to helping manage all the appointments, scans, labs and now chemotherapy and radiation. This will be happening for 5 weeks of intense radiation and a lightweight chemotherapy daily, so long drives to Stanford daily. Then intense chemotherapy for four months with a port through my chest. And with all prayers answered there is a 20-40% chance the cancer will be gone. I’ll have scar tissues to deal with but that would be amazing. And it’s 2 months of recovery for every month of therapy. But in worse case I’ll need surgery and this surgery is AWFUL and devastates quality of life for a lifetime and will require another round of chemotherapy. So we are all hoping radiation and Chemotherapy cures my cancer. One of my big stands I am taking is asking everyone to be sure they get colorguard test, they are so easy to do and saves lives!!! Thank you for reading my story, it uplifting to get all this out.


Special Notes

My schedule has been busier than a full time job, changing to a healthier diet, trying to ignore aches and pains, just keeping track of the prescriptions is overwhelming. Preparing to wear diapers at 58, for a brief time I hope! Saying it’s been hard is an understatement, but my family has jumped in, my cancer affects all of them and they are so strong for me.