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Zesty Rare Zebra
14 Posts

Zesty Rare Zebra

Good morning. I am doing really well.

I live in my own space in my eldest child's home. I have a good support group of friends from before the move, only 40 min., who now Zoom weekly but with the nice weather we can meet outside for lunch soon. I have 4 kids and 4 grandchildren in the area. Pretty sweet.

Here, I belong to Doane House and Hospice and have a counselor. For now we meet virtually once a week and I do yoga and meditation classes through them as well.

They have tons of programs and serve Newmarket and the surrounding area.

I meet my team at the Susan Leslie Clinic I Odette Cancer Center at Sunnybrook on June 10th. Dr. Angela Assal is my endocrinologist but is on maternity leave until November so Dr. Susan Tran is covering.

So far my blood and urine are 3X's higher than normal plus all the symptoms. After ruling out things I was diagnosed with pheochromocytoma. It's a rare neuroendocrine cancer. I also have Grave's and had RAI in 2013 so my thyroid meds also needed to be changed.

In addition they found a large antral gastric ulcer which they are aggressively treating at North York General. Both hospitals are connected to each other. They did eyes to the thighs CT with contrast and found a tumour in section 2 of my liver and my right kidney is enlarged.

I am being closely monitored by my family doctor with labs every 3 weeks

2 Replies
1029 Posts
Hi there, glad to read you are doing well and have a comfy home with good kids.
They going do anything for the tumor in the liver?
Blood work every 3 weeks good. Likely watching for any signs of kidney failure with your creatinine levels.
Sending best wishes out to you.
14 Posts
In 2011 I was diagnosed with Grave's,CKD stage 2 and 2 spinal hemangiomas, one at T10 and one at L2. I had RAI in 2013 fro my thyroid and have been on meds and regular blood work since. I also see an anesthesiologist monthly for nerve blocks for my hemangiomas.
Last fall I was in crisis. My potassium, magnesium, Vitamin D and electrolytes were critically low and my kidney function dropped to stage 3.
My family doctor, who is a saint, sorted it out and got me into the UHN in Toronto.
My regular endocrinologist optimized my thyroid meds, UHN found and is successfully treating my large antral ulcer and after a gazillion tests diagnosed me with pheochromocytoma.
I am being treated in the Susan Leslie Clinic at Sunnybrook starting June 10th. My new endocrinologist is Dr. Assal.
The frequent and thorough labs are to ensure I don't crash again. My kidney function is also back up to stage 2.
I have put on some much needed weight and am gaining strength for the next chapter.
One day at a time, I know it will be okay. God bless and take care.
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