Jesse’s Brain Tumour Surgery & Recovery Fund

Jesse Schpakowski is organizing this fundraiser.

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As some of you might know, I was admitted for an emergency odontogenic keratocyst excision (OKG) surgery in October of last year after suffering from extensive jaw, neck, face, and head pain.

Leading up to this surgery, I had also been experiencing additional symptoms such as unexplainable chronic fatigue, thick brain fog and memory issues.

I figured that these symptoms were, for the most part, all connected to the issues going on with my jaw. I was confident that I would bounce back to normal after the estimated 3-6 month recovery period following this type of surgery.

However, aside from the pain in my jaw and neck eventually subsiding after my surgery, my other symptoms started to become much worse. I began experiencing even more intense headaches, my fatigue had become much more severe, I couldn’t remember anything, and I was dealing with the worst brain fog of my life. As a result, I was unable to work at all for two months post-op.

The little bit of photography work I did manage to take on throughout December and January to try and get back on my feet again was extremely difficult, but I was simply trying my best to make ends meet and keep a roof over my head.

By the time February rolled around, I suddenly experienced the worst headache of my life - an intense burning pain across the front of my head that hasn’t gone away since. This night was also the same night that I almost instantly lost partial vision in both my eyes. Things had finally gotten bad enough that I knew it was time to seek medical help.

Over the past 12 months, I have felt my physical and mental health gradually deteriorating. As a result, my photography business began to fall apart as I continually had to let go of client work due to these ongoing and worsening symptoms. I had expended all of my financial resources trying to figure this out and stay afloat, and I started to wonder if I had hit rock bottom or if my circumstances could get any worse.

I soon discovered that this was only the very beginning of what will probably be a long and difficult journey.

After seeking medical attention earlier in February, I went through a series of examinations, laboratory tests, and diagnostic scans only to discover I have a pituitary brain tumour that has likely been growing quite slowly for many years until reaching macroadenoma classification. This means that the tumour has reached a size where it is causing intense pressure on the optic nerves behind my eyes.

The tumour was initially discovered on February 26th by the optometrist I saw to try and figure out what was going on with my vision. I was then sent in for a CT scan in Nelson, and received the results a few days later that confirmed I had a brain tumour.

As shocked and unprepared as I was, I felt I had finally found an answer for the extreme fatigue, brain fog, memory issues, burning headaches and vision loss I had been experiencing. As it turns out, the pituitary gland is responsible for regulating most of the body’s hormones, which could be the reason for some of my other confusing and ongoing symptoms. While in some ways having an answer feels like a relief, there is a bit of a long road ahead to get through to the other side of this.

This week, I will be going in for additional bloodwork to check on my various hormone levels. As I await results from an endocrinologist, I will also be waiting for a phonecall to schedule an MRI in either Trail, Cranbrook or Kelowna, whichever hospital can get me in the fastest.

I am also awaiting a phonecall from the hospital in Kelowna to schedule a neurosurgical consultation in preparation for a procedure called transsphenoidal endoscopic pituitary surgery. This procedure is where a neurosurgeon inserts an endoscope through the nose to remove the pituitary tumour, which is located at the bottom of the brain and above the inside of the nose.

Recovery from this type of procedure involves ongoing pain medication to control headaches, ongoing follow-up visits with my endrocrinologist and neurosurgeon, repeat MRI’s to assess any potential brain damage or permanent lesions to the brain, along with various visual tests performed by an ophthalmologist to monitor the hopeful return of my vision.

Risks include cerebrospinal fluid rhinorrhea or leakage, meningitis, damage to normal parts of the pituitary gland requiring hormone therapy, diabetes insipid, heavy and persistent bleeding into the brain in the case of blood vessel damage, and irreversible vision loss. So, although this type of brain tumour is usually benign, as you might imagine this has all been very overwhelming for me to take in.

The irony of being a photographer that has been diagnosed with a brain tumour that affects my vision and has a risk of permanent vision loss, is not lost on me. This is the part that has affected me the most up until this point, as well as the part that worries me the most for the future.

Because of my vision loss so far, I have been unable to work taking and editing photos on my computer. I am also currently unable to drive as a result of how this tumour has affected my vision, and depend on my partner and others to make my medical appointments and run all of our errands. I am hoping with all my might that this vision loss is temporary and that my eyesight will return once the tumour is removed and the pressure is relieved from my optic nerves.

Needless to say, as a professional photographer, my eyesight is extremely important to my craft and to be in a position where I can’t pick up my camera right now is absolutely devastating. I feel like photography plays such a big role as to why I’m here. Call it my life purpose.

Over the years, I’ve heard from countless people how much they appreciate my work and the ways it's made them feel. I’ve even been told that the “ripple effect” my work has had on some people has influenced their decision to move across the country and live here after seeing photos I took of a particular location in the area. There is nothing I would love more than to be able to continue this work in the world by heading out into nature with my camera today and every day, but I’m coming to realize that God might have other plans for me that I’m not quite able to understand yet until I can overcome this considerable obstacle in my life and hopefully learn the lessons it is here to teach me.

This is my second GoFundMe campaign in less than six months and it has been incredibly hard to continue asking for help throughout this ongoing diagnostic process. At this point, there are still a lot of unknowns until I am able to undergo my MRI and consult with a neurosurgeon to find some answers on how long the current wait is for this kind of surgery.

Until then there is no way to know how long it will be before the first available surgery date and I am also unsure of the recovery time for something like this with a best-case scenario that has no complications or lasting vision or hormonal damage. However I am thinking that this journey from start to finish will pretty much take me through the spring and summer, and potentially towards the end of 2024.

My 38th birthday is coming up on March 8th. Several months ago I had made a list of personal and professional goals that I had hoped to achieve by my birthday but never in a million years did I think I would be preparing for neurosurgery instead. As difficult as it can be sometimes, I am really trying to remember to trust the process and know that the things in my life are unfolding just as they were always meant to, even if I am not supposed to see understand the reasons and answers for it all quite yet.

Any funds raised from this fundraiser will first and foremost be used to help keep up with the basic cost of living (rent, utilities, bills, food) after several months of already struggling to keep up while trying to figure out what was going on with me and my eyes, and while I await my surgery date.

Funds will then be used to cover the cost of travel-related expenses to and from Nelson, Trail, and Kelowna for lab tests and bloodwork, MRI, consultations with the neurosurgeon and eventually surgery which will require time spent in Kelowna with my family as caregivers.

Funds raised will also help cover the cost of any prescription medication and at-home medical supplies required after surgery.

The remainder of funds raised will be used to cover the basic cost of living during my recovery from this procedure & ongoing observation, exams and testing to monitor my progress and the condition of my brain, affected hormones and of course, my vision.

Thank you for your ongoing support during this challenging time in my life. I am looking very forward to getting back behind my camera and creating art and photography with a new perspective and “fresh eyes” of gratitude once I am on the other side of all of this, so that I can begin paying it forward to everyone who has shown me such incredible generosity and kindness over the past several months.