Personal Blog

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.

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.