Personal Blog

To Dream a Dream

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.

Goodbye 2019,Hello 2020

It had been a year of many firsts.

First time I got lucky bags from New Years Sale frenzie in Japan. First time praying at a temple to start the new year.

First time I have ever not work for a long period of time (almost one year in March)

First time I traveled overseas with one my best friends. First time I met my penpal in her home country, traveled to Helsinki and then Stockholm.

First time I joined an art studio and made art outside my home.

First time I ever had surgery. First time I had to have repeat of the same surgery. First time I ever rode in an ambulance. First time I thought I may die from being in the ER the second time after feeling like I almost died there the first time.

First time I had been hospitalized

First time I spoke to my father in 5 years.

First time I spoke to my aunt in 5 years.

First time I spoke to my cousin in more than 10 years.

First time I ever feel so depressed that I didn’t want to live anymore thinking that I have had a pretty good life so far.

First time that I have to go see a therapist.

First time I rode on an electric scooter.

First time that I sold my art online.

I got much love and concern from many and am grateful for knowing that if I didn’t make it, at least my funeral won’t be without people.

Alexa, bring me my Ativan and play some jazz music.

The sun was glaring and Darwin just loved basking in the sun. I went to pet him and laid down beside him on the floor of my office/art room (that looked like a tornado had torn through) The ceiling had a small water stain about the size of Darwin’s bat ear from the attic rain. I stared at it for a long time… That stain aggravated me. The aggravation it provoked was not proportional to my usual care-free self. Or maybe I had always been more neurotic than I am willing to admit and just do a great job at hiding it. I couldn’t get up from the ground. My body felt incredibly heavy and my body just stopped listening to my mind or maybe it was the other way around. I had to pee but the bathroom was a hallway away too far. I remembered trying really really hard to will myself to get up or I am going to end up soiling myself and I thought I had became one of those patients with catatonic depression. The problem with knowing what you have is knowing that you have it. The problem with talking to someone about what you know you have is having to talk about it.

And so I knew going to see a therapist, and having been one myself was going to be “one and done” or “tell me something I don’t already know” In fact, my first thought after I had made the appointment was to call the following day to cancel it (Classic move – I had so many know-it-alls cancels and rebook all the time)

Can one be an expert in suffering? Why yes, if you devote enough time to it, you can be an expert in anything. Suffering is no different.

Pain in life is inevitable but suffering is optional.

Siri, who is the best neurosurgeon for pituitary adenomas in Canada?

I am home now recovering from my second pituitary operation. Yesterday at my follow up appointment with my endocrinologist revealed that my cortisol levels have crept back up again, and my levels immediately after the operation did not drop to the levels indicative of a cure. The pathology report of the piece of whatever my brilliant neurosurgeon removed indicated it was just some soft tissue and not even the adenoma itself. This translate to my neurosurgeon went up there prodded around a second time and did not get the tumor. My follow up with the neurosurgeon is in 6 to 12 weeks, which I am trying to expedite so that I can get a second opinion and proceed with trying to find a more experienced neurosurgeon elsewhere in Canada that may do a third pituitary operation before considering a bilateral adrenalectomy.

I have lost confidence in my neurosurgeon in being honest with me. At my last follow up appointment before my second surgery he was evasive and vague when I questioned why the resection was unsuccessful and if cells that were left behind grew back that quickly. He could not give me a straight answer for those two simple questions. At one point he even doubted that I had Cushing’s Disease (until the MRI revealed that there is residual tumor left behind) I obtained the postoperative reports from both surgeries from my family physician and the story that my neurosurgeon is telling me is inconsistent with what is dictated on his report.

I have started research on neurosurgeons in Canada with specialization in functioning pituitary adenoma. So far, it looks like Toronto have the most promising candidate.

This never ending saga is frustrating.

The Cushie’s Journey Continue…

117 days after my surgery, 2 unexpected post operative complications, 21 days in the hospital – I am back where I started no better than 117 days ago. 26 days until my next surgery. It went from “comparatively this surgery is easier than an oil change” to “it is a very specialized surgery and Cushing’s disease can be challenging”. The neurosurgeon said he had 3 surgeries that day and he saw the other two patients for follow-up and they are cured and doing just fine. As if the odds of 2/3 ain’t bad for a neurosurgeon’s record on a Friday work day. After the devastating news (that I was never cured because he was not able to remove all of the cells and was evasive about the reasons why he couldn’t get all of it) – the pessimist in me tried very hard to look on the bright side and hold on to the believe that the Universe have a plan for me and that everything happened for a good reason. I am starting to think that part of that plan was to give me more time to work on my art portfolio and actually have a deadline to follow through with it. At the end of our meeting, he said “WE will get you better” – I always use the word “We” eluding to the fact that it is the multidisciplinary team that is responsible. Not solely my responsibility. I know what the word “We” means. It means he was worried about me blaming him for not being skilled enough to remove all the tumor cells.

During what I thought was my recovery (before I found out the surgery was unsuccessful) I had never felt so depressed and anxious. I booked an appointment to see a therapist. The very next day I pull the classic “help seeking, help rejecting” PD card and almost cancelled the appointment. I had two sessions and unsurprisingly decided on my own that I do not need anymore because she was advising me on things I already know I should be doing in order to feel better. Changing the narrative that I am a victim of terrible luck, using imagery and self talk to calm my restlessness… All of this I know. A therapist needing therapy makes the worst clients to deal with. I have experience on both sides now I guess.

Working on my art portfolio to submit to art school helped me cope with the situation. But as soon as I finished, I am left with nothing to work towards and back to worrying about things that I have no control over. I guess I could have easily walked down the street to get some cannabis to take away the restlessness and sit there like a sloth not caring about how much time I am wasting not caring about anything. I just couldn’t do that. Time still hold much more value to me than taking away that discomfort. I guess I can pat myself on the back for being strong that way.

There is a reason why they say “ignorance is bliss” – the first time, I can be brave because I didn’t really know what to expect. I am confident that I can make it through whatever happens because the human mind and body is amazingly resilient. Comparatively to other patients on the neurosurgical unit, my case had extremely good odds for good outcome. I am more nervous about surgery this time than back in June because I know more. The two readmissions through the Emergency Department for my complications were more traumatic than the days post op. I had written a complaint letter to the director at FMC ER and through Patient’s Relations. Today, on the same day I got my confirmation for my surgery date, Patients’ Relations called me to ask me if I would be incline to meet with the director, the manager and the physician chief. I must say that I was surprised that these tower people actually want to meet with me. I know this would probably cause me more stress than I need just before the surgery, but I also feel a sense of obligation to see this through because I believe in patient advocacy and not being afraid of having my voice heard.

This illness and in the past 6+ months also made me look at the relationships around me. which of my friends and family genuinely care about what goes on in my life. All the lucky auspicious ornaments I have acquired along with the good vibes attach to it. I dislike having to rely on others. I never minded always being the one reaching out to people to spend time together. But after my surgery I felt like such a burden I was very hesitant in doing so. At this point of the blog post you also may or mayn’t realized how much I dislike being dependent on others. So I am grateful for those of you that have made the effort to come to me and made me feel loved instead of being useless. These people know who they are and how much I love them.

When this thing actually have some sort of resolution, I may just have enough materials to write a memoir about it.

Million hours of podcasts

Having a set surgery date helped me eliminate one uncertainty out of many that created lots of anxiety.  The surgery date was set for a week after coming home from my trip to Helsinki and Stockholm in May. 

When I found out about the confirmed diagnosis and planned surgery, I thought of cancelling the trip out of the irrational fear that I may keel over and die due to exhaustion in beautiful Stockholm next to the pier on a sunny spring day…. I mean, I have been living and travelling with this tumor for the last 5 years without dying, I know it is completely irrational to think that this trip would be any different.  My friend asked if I had ever regretted taking a trip.   I said no and she was right.

I was still working in February and I tried to distract myself from worrying excessively over many things that I cannot control by controlling things that I can such as planning my trip. Despite my efforts, I could not resist looking up articles on Transsphenoidal Surgery and recovery statistics. The more you know, the more you worry and I didn’t want to worry but I also couldn’t help it. Finally knowing what was wrong with me and having a plan to treat it was truly a blessing that I was grateful for. I did not expect the emotional stress creeping up on me to the point where I could not function at work anymore… I actually thought I could still work until my surgery date in June by taking a few days off here and there but the Universe had an other plan.

I went to my family doctor to have disability forms filled out in anticipation of being off work for more than 2 weeks after my surgery. My supervisor pulled me aside at work one day to tell me that she got a phone call from the manager whom got a phone call from the ability advisor notifying her that I am on medical leave. This literally came right after I had a meeting with my supervisor that morning planning the transfer of my clients and my leave of absence after June…. See what happens when I tried to plan? The date my family doctor filled out stating that I am unable to work was the date I saw her for a follow up appointment. So I should have been at home resting to prepare for surgery and not working. After some discussion, it was decided that I would finish the day and not return to work tomorrow. I felt like I was being fired and had to pack up my office by 4 pm. I was surprised and conflicted about it all while my friend at work was like “That’s awesome! You get to sleep in tomorrow, and the next day…and the day after…”.

Darwin loved that I was home keeping him company, giving him massages and taking him for walks.  I talked to my mom on the phone often while I paint and putter around the house.  After about a week of this, I quickly grew tired of being alone during the day with no humans around to tell me their problems.  This led me to look for studio space for creating art.  I came across Burnt Toast Studio and rented a space there to paint.  I had always wanted to have an art studio space…not because I don’t have enough space at home…well maybe I don’t.  My stuff occupies two small bedrooms, downstairs living room, basement and as Josh puts it my “creativity spills over” the dinning table as well.  Two months before my surgery, I developed a routine of driving up to the art studio at least a couple times a week during the day to paint – hoping that there would be other artists to chat with and make art.  However, it was not what I had envisioned.  The place was mostly empty when I am there during the day because people have day jobs….  I did make use of the space (I listened to hours and hours of podcast) and created a 48” x 48” painting that needed a van for transport.

#art #painting #memoir #amediting #yayoikusama #amwriting #story #personalblog

Traveller with a Free Spirit

Unbeknownst to me, when your tumor gives you an insane amount of steroids for so long, you can really do anything. During my fertility trials, I grew increasingly anxious and impatient with the idea of wasting my time pursuing something that I am only half hopeful about. I honestly think that the “secret to life” and reaching “enlightenment” is the simple realization of how valuable Time is. Time is the only thing in life that you cannot have more of no matter how hard you try.

“Spend your money on the things money can buy. Spend your time on the things money can’t buy.” – Haruki Murakami.

I had been working on the same unit for almost 6 years (which is the longest job I have ever been at) I grew restless and even though I was good at my job and enjoyed it, I needed to do something different. I wanted to travel, I wanted to get a new job, I wanted to experience new things. I was tired of doing the same thing everyday even though it was not terrible nor was I miserable. I thought about going to school again for my Masters in nursing or something completely different like Interior Design (which I did complete a certificate for decorating and then realized that I don’t want to be dealing with annoying people in that industry). There was a thirst for new knowledge.

So I went and got a new job in the community. I reluctantly said good bye to a wonderful group of nurses that have taught me so much over the years…and the wonderful friendships that I was blessed with (which I am grateful for today because these friendships continued on) Around the same time, I was looking at the world scratch map that Josh bought me trying to decide where I should go for my first solo travel trip. I read articles and blog posts about solo female travellers and we talked about where I would want to go and how to safely travel on my own. In August of 2016, I decided on Amsterdam and Copenhagen. I had never been to Europe before…the thought of travelling to Europe by myself for the first time was a little scary but also exciting.

Traveling on my own was one of the best decisions I have ever made. Some people may think that I am selfish to go gallivanting around the world while my husband stay home and eat popcorn and peanut butter sandwiches for dinner. Some people may think that my marriage is in trouble or else why would I go on vacation without the love of my life? I believe that there is a certain degree of selfishness that is healthy for all relationships. After all, you have to be just selfish enough to feel secure about yourself and love yourself before you can love somebody else. The decision to travel on my own meant taking the first step in putting myself first before anyone else. As one travel blogger noted – “It can be scary traveling alone, especially when you’ve never done it before. But, to me, growing old without experiencing everything you want from life is even scarier.”

You have to own your own mistakes and learn to trust your intuition when you travel solo. Like waiting on the wrong platform for the train or buying the wrong ticket. There is no one next to you when you react to a negative situation and try to find somebody to blame. You kind of have to learn how to be kind to yourself instead of angry when you make mistakes because you are all that you have in that moment. These are valuable lessons that can’t be taught in school and I think it did save my life when I made the decision to go back to the same emergency department where I had my last terrible experience at.

  “As I get older, it feels like the years pass by more quickly.  I was wondering why that is.  Then I realized that it might be the same as the experience of traveling some place you’ve never been before.  On the way there, the road seems to go on forever.  But on the way back, you’re home before you know it” – Unknown.  

#memoir #stories #amediting #nonfiction #travel #amwriting #personalblog #authorlife #travelblog #indieauthors