Hello, everyone. It's been a while since I've been on- basically in denial mode for mental survival. Have had to take a break from the emotional strain I had been under since July1 2018 when dx with "high grade urothelial bladder cancer" (AND TREATED FOR 9 MONTHS), which Johns Hopkins correctly diagnosed as paraganglioma of the bladder. That's where my tumor was making it even more of a rarity.

I had both ovaries/tubes removed 8 weeks ago d/t "cyst" changing in composition. I had a partial hysterectomy in 2006. All was benign, praise God. Anyhow, I had a PET in April this year that showed "possible reactive lymph node" at aortopulmonary window (defect where aorta/pulmonary vein connected by small vessel allowing blood to go through), no evidence of metastasis. My local uro consulted bladder ca doc at JH and he said it didn't "look" typical and the uptake wasn't too much to just "watch" it. So, I will have another PET and cystoscopy at end of the year and then yearly.

I had metanephrines done before the GYN surgery which were negative.

I recently developed a cellulitis of the face and was put on prednisone and 200 mg Keflex daily x10 days. The doc didn't do a taper so I did my own. I have been off of it for 4 days, but I have been sweating, weak, having headaches intermittently. My blood pressure was up yesterday, 145/84. I usually run 117/78. I will keep monitoring it. I have gained 20 lbs in the last year.

Long story short- I do not have a "following" doc. My uro can consult JH doc but there is no one here to follow. JH doc says if needed I can return to JH to their neuroendocrine team. There is no way I can be a patient of MC, as much as I would like to. I am single, no family and work full time.

Right now I am wondering if I need to see a cardiologist d/t the AP window defect found on my PET (always knew I had a murmur but didn't know what was causing it). I am just over all of this. I need to be normal!

Thank you all for checking in and for sharing your stories. You are all in my daily prayers and I pray for your continued health and happiness 🙂