Stay Calm and Panic!

For the past year, my world had been full of uncertainties and anxiety about what my future will look like. Whether or not I will ever be back to “normal” – pre-Cushing’s disease. Those of you that have been following my journey know that I had two failed surgeries and lived through experiences that I never thought would happen to me. There were times where I felt so defeated that I was just glad to have done almost everything that I wanted to do in this life and just call it a day. It has taken time and patience to pull myself together and try to make the best of it all because I know how things could always be worse and that I am fortunate enough that it is not. Last year, in between dealing with my health issues and recovery, I worked on my portfolio for art school. I applied to my “dream art school” – one of the top art universities in Canada and got my acceptance letter just before everyone is advised to stay home due to a pandemic that no one in our generation or the one before us have experienced.

My consult for bilateral adrenalectomy with the endocrine surgeon is scheduled next week but they have just announced that all surgeries that are non-urgent are suspended in preparation for what is to come. I had plan to have surgery this summer so that I can go to school in the fall which doesn’t look like it will happen now. I am still grieving over this. For me, given so much that have happened this past year, was another unexpected disappointment – a series of unfortunate events. It seems that the universe would give me a little bit of hope and then take it away shortly after.

“You know what kind of plan never fails? No plan. No plan at all. You know why? Because life cannot be planned.” – Kim Ki-taek, the movie Parasite.

While it is hard to accept that many plans fail. It is much harder to think that I may not be given the opportunity to come up with a plan if I am dead.

Close to 500 people died in Italy today, it was very much the same in Wuhan in China just a few weeks ago. There were unbelievable videos posted showing crematories simply could not keep up with the amount of dead bodies. Some people will choose to shield themselves from such terrible news/facts and that is rightfully their choice. And some people will choose to be completely ignorant and continue about their lives with minor inconveniences for now. One thing is for sure though, the whole world will suffer economically for years to come which is inevitable unless you are the top 1%. I learned a great deal this past year about so many things that it would take a long while to write about. But for now, despite not being able to go to my dream school and not moving forward with curing my disease I keep telling myself:

Buona salute e la vera ricchezza

“Good health is true wealth”

and another Italian proverb: “The person who enjoys good health is rich, even if he doesn’t know it”

Because I am grateful to have another day tomorrow when I wake up with a roof over my head and food in the fridge. Thanks to my incredible mother – even though her own small food business is barely sustainable and going to be out of business soon (despite my resistive plead) she continues to hull food over to my house to drop off at my doorstep so that I don’t have to go to the grocery store. My sympathies for all those lives lost due to this virus and the many more that will come in the days ahead. There is another Italian proverb: “As long as there’s life, there is hope”. Let’s take care of each other and do everything that we can to save lives.

Much love,

Melody


So I couldn’t sleep and was thinking about the article that Jan sent me to read this morning about Dr. Powell’s personal story of becoming a patient himself.  My next thought after that was a friend that I worked with (also a nurse) telling me her experience at FMC ER a couple of weeks ago.  And then after that came the flashbacks of my own experiences in the ER last summer after my surgery.  I can’t recall if I started writing about it but stopped or if I mentioned it in other posts but didn’t go into details.  In any case, since I am having trouble sleeping again, I decided to get up and write.  

About 8 hours after being discharged home, I was in crisis.  Adrenal insufficiency is a medical emergency but I was not treated as such.  This is an excerpt of the letter I sent to the director and manager of FMC ER  :

On July 3rd, 2019 – I was discharged from unit 112 (my post op was complicated with transient DI otherwise it was uneventful and I felt comfortable with discharge plan).  I presented to FMC ER 12 hours later with symptoms of hyponatremia secondary to adrenal insufficiency resulting from my surgery (which I found out much later from internal med).  I did not receive treatment for a potentially fatal medical condition until 12 hours later.  I was only offered and given hydromorph with maxeran right away to manage my headache and mask my symptoms of what is going on.  I arrived at ER with my husband at around 2 am and I was triaged quite quickly.  I was seen by the nurse around 3 am where bloodwork was drawn and assessment completed rather quickly.  At around 4 am, the attending ER physician came to do his assessment.  Behind the pulled curtains, my bat ears overheard the physician say to the nurse that “She just had major brain surgery, of course she would have a headache”  Because I had heard this, when he assessed me, I assured him that I never had headache like this post-op not manageable by regular Tylenol.  Again, in my experience, I know that not every doctor read through the whole chart/history of the patient – so I also mentioned I was diagnosed with Cushing’s disease prior to surgery.  He brushed me off and assured me that he read my medical history.  

Nobody (aside from the neurosurg resident that was consulted and saw me once told me that my sodium was “a little bit low”) In that 12 hours, I tried advocating for myself (while heavily sedated) and asked the nurse multiple times about the results of my CT scan that the resident had ordered and reported worsening symptoms of higher urine output.  I also asked her about repeated bloodwork which was not drawn again until 12 pm.  From the time that I was assessed by Dr. Michalchuk in the ER at 4 am, I was not seen by the new ER physician Dr. Su again until 2:30 pm when I again pressed my nurse to get off her lazy ass to do something because she only had two patients her entire day shift and was observed to be on her cell phone.  At 3pm, I was finally being treated with hypertonic saline and IV hydrocortisone.  Because I was left untreated for so long, my sodium dropped to 124 when it was drawn at midnight on July 4th.  

When I came around and realized what had happened (I could have seized, left permanently disabled, I already have tachycardia…the list goes on).  I can only conclude that it was gross negligence under the care of the providers the 12 hours I was in Area A at ER.  
…I am seeking justice for my mistreatment, but most importantly, I am concern with others’ lives being put at risk because of negligence due to an attitude of simply being complacent.  I am proud to be a patient advocate in my own nursing career and I will continue to do so even though I am not working right now and recovering at home.  I want your respond to immediate actions taken to safe guard those patients that come through your ER.  If I do not get a respond from you within a reasonable time frame, I will proceed with reporting the story with CBC so that my voice is heard (even though I do not entirely believe that this is a good thing for the morale of your ER team)  I had overheard one of my nurses sarcastically asked the patient next to me about finding a way home after discharge (referring to the Pincher Creek lady’s story) – She was so disingenuous, I could not believe it.  

Less than an hour after that email was sent, I got a reply from the director and manager via email and then my phone rang.  At first, the manager seems to have a rebuttal for every concern that I had – she was well prepared, she had gone through the paper chart and SCM (which I already had obtained from health records) It would appear that procedures were followed properly and i’s were dotted and T’s were crossed.  

Further into our conversation (which was almost an hour long) I asked her, what if that was your daughter, or your mother, sister lying on that stretcher for 8 hours already suffering with no plan, no communication from anybody about what is going on to someone that just had brain surgery.  I told her that when my husband and mom left briefly to go home to rest and look after the dog, I was alone and started crying.  There was not even a box of Kleenex near by and my nurse could not even bother to bring me one – she half-heartedly said “What’s the matter?  Oh I know it has been a long day” In which I replied, “Um, no I have been in the hospital for over a week – I basically just went home to shower and change and now I am back”. She was the least bit interested in providing any genuine comfort or reassurance.  Sharleen (the manager whom I was talking to) I can hear her tone of voice changed after that.  I asked her if she would like her family be treated that way if one day they end up in her ER.  There was a deep sigh and I felt a slight resignation from her after that.  

In my letter I had threatened legal actions and selling the story to CBC if actions weren’t taken immediately to address my concerns.  So I left that in her capable hands to do what she said she would do.  Patient’s Relation would be involved just so that there is a paper trail and a third party to witness a meeting that would take place between the manager, the director and the head physician of ER.  

After feeling somewhat victorious in getting that off my chest – 5 days after that phone call, never in my wildest imagination could I picture myself back in that ER again.  I woke up at 4 am choking on my own blood.  Apparently delayed massive epistaxis post transsphenoidal surgery happen in less than 3% of patients treated.  We called EMS and when EMS asked me which hospital I want to be taken to…I seriously thought I was going to die, like this is it, my brain will swell by the time some doctor actually sees me.  They kept asking me which hospital I want them take me to.  It was one of the toughest decision that I ever had to make.  In my head I thought I had just complained last week, everyone there will have known by now and this time I might just die there.  I had no other choice, it was the only hospital with neurosurgery and ENT, being rational during such a frightening state is extremely challenging… 

When we got there, the ER was swamped with the aftermath of “Last weekend of the Stampede” – I was placed in a wheelchair near the loading bay non visible from triage desk (there were already 2 -3 people waiting in stretchers with EMS which I knew was not a sit around and twiddle your thumb night at the ER)  – my nose still bleeding…only at a higher rate and that useless nose clip they want me to keep on does absolutely nothing because within 15 minutes I was throwing up blood clots.  The paramedic coming on shift was trying to reassure me that there are oodles amount of blood in my body that I won’t bleed out to death (I couldn’t tell her because I was coughing up blood clots that my concern is not losing blood volume, my concern is I just had brain surgery and a week ago I was in adrenal crisis and I have no idea if my half chopped off pituitary is actually producing any ACTH to alert my adrenals that I need more cortisol to deal with this trauma – and then I could almost die again). Yeah, she didn’t know that I am a nurse.  

Blood was starting to pool into my ears, my hearing was getting muffled – finally what seemed like eternity, a doctor said he would see me in trauma bay (Trauma bay is a reserved area for people coming in with bullets or pieces of doors stuck to their side from MVAs) Guess what? It was my lucky day!  It was the same ER physician that actually treated me and got me admitted after waiting for 12 hours circling the drain at my last visit.  The nurse that came on after change over…even with her gown and mask on, I recognized her voice.  It was the same nurse that I gave the name to the manager – one whom I complained about.  Josh said she looked like she was about to cry when she saw me half dead covered with blood.  


….[continued from my letter] I believe that health care providers need to be accountable for their own actions and stop using excuses like the system shortfalls for their conduct and care (in my case, the ER that night and part of that day shift was not busy at all)  Their actions were consistent with the “pass the puck” mentality where do as little as possible and leave it for the next shift or someone else should have put those orders and consults in, I shouldn’t have to follow up and harass them until the patient harasses me to do something.   These people need to be held accountable for their behaviours and actually have real disciplinary actions taken against them – real consequences with stakes as high as losing their livelihoods (licenses to practise)  Nobody deserve to get paid 50 dollars an hour to sit and watch someone circle the drain and then go home.

If you are no longer passionate about working in the ER or just become so complacent with being a nurse.  Find a new career.  I believe that the majority of the people that chose Nursing as a career are genuinely kind hearted and altruistic beings.  I get it, life wears you down.  Many don’t feel appreciated, and the system is far from maximum efficiency.  But going to work is a choice.  Choosing to be the best nurse that you can be that day despite what is going on in your personal life is also a choice.  It is a choice to call in sick and take a mental health day.  If you can’t be compassionate with yourself you can’t be compassionate toward others.  

I can’t help but think that the Universe needed me to go back to the ER for a second experience to see if my complaint had worked.  There was absolutely no explanation to why I had massive epistaxis 19 days post op.  It was such an anomaly that I sit that trophy next to the rare Cushing’s disease one.  

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.

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

Unexplainable

I am one of those people that always have the “Parking Luck” – It would be Boxing Day or Black Friday at the busiest shopping mall in the city but somehow always manage to snag a good parking spot within 5 minutes of pulling in while other patrons have seemingly circled the parkade for hours. Josh used to be mad and then dumbfounded by my “Parking Luck” When he drives and I am in the passenger seat, our luck would be split. He would pull up near someone leaving but another person have JUST beat him to it coming from the other side or he would drive right by an open one and then someone behind him snagged it. When I drive and he is in the passenger seat, maybe it would take me an extra 5 minutes to get a parking spot on Christmas Eve at Superstore…

I always wondered where I earned this “Parking Luck” from… Why the Universe grant me this special power in life.

The day I had my surgery, Josh and my mom came home to grab a few things in the evening. When Josh walked in the house, an original Japanese woodblock print of two Shinto Samurais (gifted by my favourite psychiatrist at the clinic) that was hung on the wall for two weeks prior to my surgery had “flew off the wall” – Glass shattered to tiny pieces all over the living room floor. It also knocked off my Darwin painting below it but it was not damaged at all. The frame did not break but it landed far from the wall and the delicate print was intact and found out of the frame another feet away from it. My mom said Josh looked like he had just seen a ghost… They vacuumed up the shattered glass (which took a very long time) and Josh did not want to sleep at our home by himself that night so he went over to my parents for the night. Mom kinda teased him about being a “scaredy cat” – I can empathize with the reaction that Josh had because he had seen what my mom did not when I was a few hours post op and was throwing up blood through my nose and mouth looking like death and having to have a foley catheter put in on the unit because I could not get up to go to the bathroom. He probably never seen anyone that sick in his life.

Josh and my mom didn’t tell me this had happened (they did not know whether this was a bad omen or not because I had only came out of surgery) Not until I was discharged home the first time. Josh and I walked in the house and he froze and looked at the wall as he sat some stuff down on the kitchen table. I said “you look like you had just seen a ghost…what is it?” I had not noticed that the two pieces of art on my wall was not there anymore. That was when he told me what had happened. We kinda mulled over it for a little while over the Poltergeist phenomena and just chalked it up to it being a good omen instead because I am home now from the hospital (did not think that I would be returning to ER just 10 hours after)

When I started writing this part of the story, I looked at the print again (actually I had looked at it several times the last two days since I had been home) because it kept me curious… Josh had asked me what those two figures are. They are Shinto Samurais. Anybody have some understanding of Japanese culture and been to Japan may know that there are two kinds of places of worship in Japan. Buddhist temples and Shinto Shrines. Josh and I had been to both. Most recently in January before my tumor diagnosis. I prayed sincerely at both for good health for myself and my family. I think I have my answer of how and why that print had flew off the wall. The other piece of art left hanging on the wall is the self-portrait of me sitting in therapy with Darwin.

I don’t have a formal believe or declaration of a certain religion that I follow by any means. In fact, I am of the opinion that religion like Christianity is the biggest business driven conspiracy of all conspiracies…

What I do think is that the Universe work in mysterious ways (as cliche as that sounds) And that there are things that can be half explained and may not need to be fully understood but when you kind of get close to it, it is kind of mind-blowing… Like my mind is blown right now after writing this story.

One of my favourite Haruki Murakami quotes: “If you can’t understand it without an explanation, you can’t understand it with an explanation.”

To be continued…

#memoir #literature #nonfiction #supernatural #story #personalblog