It was hard to hear and much to accept that after a year and two surgeries that I am back to exactly where I was before. The only difference is that now I have less of my anterior pituitary gland. I am a glass half full of poison kind of person, so when the endocrinologist told me that my blood work was normal (just before Christmas) I tried not to get too excited about it because I know how having expectations could be dangerous…
3 weeks after being blessed with what I thought was good news to share with family and friends, the sneaky Universe smashed that tiny hope into submicroscopic pieces. The MRI show no residual tumor and the pathology from the piece that the surgeon took out in November revealed no adenoma tissue. Repeat lab work revealed that I am still producing excess cortisol. Deep down I knew that I was not cured. Aside from the physical symptoms of fatigue and pain. How else could you explain that a French Bulldog mom with no work commitment and all the time in the world to do whatever I want be depressed and anxious over nothing.
Everyone around me is supportive and tried to convince stubborn ol’ me to be hopeful and positive. So I thought, fine, I’ll try to not be a stick in the mud and booked a trip to Tokyo in February to visit my father whom I have not seen in many years. I told myself to stop letting this illness dictate what and when I should do what I want to do. Finally, I had something to look forward to instead of something to dread towards – because now my only option of curing this illness is a bilateral adrenalectomy.
So I had flights and Airbnb booked, restaurant reservations made and a list of stationery items to stock up on while there. Just like my luck of having this rare disease – the Universe decides to unleash a mystery virus and create chaos in that part of the world I am about to travel to. My brother and I are both immunocompromised and my husband have such terrible hygiene (aka a super spreader of viruses but never get sick himself). It was decided that our trip be cancelled.
My parents had ordered some N95 respirators for us to bring with on our trip (before we decided to cancel it) – due to a miscommunication, instead of ordering 60 pieces…we found ourselves with 60 BOXES of N95 respirators (20 in a box). Next thing I know, I am selling boxes of N95s out of the back of my car to people in need of them (to mail back to families and friends in Asia) but can’t get any because of people buying them up to profiteer off of it or think that they actually will need to wear them here in Canada. Because I wasn’t selling them for a profit and people can actually afford them, the response was so overwhelming that all the extra ones I had were all gone in 48 hours.
I had applied to Emily Carr and AUArts prior to my surgery last summer and have been accepted to AUArts here. I should hear back from Emily Carr by April. I will be meeting with the endocrine surgeon at the end of March to discuss getting a bilateral adrenalectomy. In the meantime, the future remains uncertain (other than death and taxes). I am using the bits of energy I have every now and then to do meaningful things like amassing and sending medical supplies back home to family in China and Hong Kong. And creating art for my next show and sale.