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.

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