Wednesday, 23 September 2020

Acute Myeloid Leukemia

 So back on the 21st of June 2020 I suffered an avulsion fracture on my ankle while at a Bouldering Gym.

I spent a bit off time off from work, before eventually going in three times a week on half days while my Wife was working from home during Covid. Eventually when I was able to drive, though still on crutches I returned to work 5 days a week for half days. My injury seemed to be taking ages to heal and the bruise under my foot took ages to go away. After many weeks when it disappeared I was finally able to put some pressure down and in a short amount of time I was walking (with a bit of a limp). I eventually got medical clearance and was finally able to return to work full time, glad to be up and walking around stretching my ankle muscle and looking forward to getting back in to hiking. 

I had noticed some small bruises on my arms but put it down to where the crutches had constantly been rubbing on my arms. I had called my Dad and was wanting to organise hiking at Barren Ground as my first hike since my injury, and first hike with him since his rock climbing accident. I thought it was a good walk for the two of us as it was a long and mostly flat walk. I had also really wanted to finally blog about it, as I had actually done the hike a few times and at one point photographed the whole thing in preparation for a blog post. However time got away from me and I forgot the walk or anything to write about sitting with a folder of photos and a draft blog from 25th August 2015, which if I had wrote it would have made it my blogs fourth ever blog post.

However random bruises kept appearing on my body, and I began to get concerned (although I only thought it was a Vitamin D deficiency from being stuck inside due to my ankle). I booked a Doctors appointment for the next Monday as my Wife was concerned about a freckle on my back and locked in hiking with my Dad for the weekend.






Before the weekend came my Dad called to inform me my Nan was in hospital with pneumonia, which she has been in hospital for 4 times the previous year. He was going to travel up to Woy Woy to visit her and I asked if he wanted me to come. He told me not to worry because of Covid restrictions. My Nan ended up recovering.

I enjoyed a nice weekend with my Wife and Dog before returning to work Monday the 24th August, where I went to the Doctors on my lunch break. My back freckle was fine but I was sent for a blood test about the bruises.

I continued my day at work when around 4pm nearing the end of my work day my Doctor called saying my results where concerning and to go to a hospital straight away, this threw me completely and I barely remember the call, going numb and fuzzy. As I went to my desk to try to collect my bag I tried to tell my team members I had to go to hospital, breaking down as I said it. My work colleague ran after me as I left telling me I couldn't drive in my condition as he drove me to Shellharbour Hospital. 

I called my Wife who was very upset and her and her parents came, as they needed to collect my car. They did a bunch of tests and eventually the Doctor told me it was Leukemia. I broke down crying, saying I was going to die and even if I beat it, it would come back and kill me.

Eventually they transported me to Wollongong Hospital, while I sat stunned and dazed feeling pretty defeated. I was taken into a room where I guess more tests where done as it got very late into the night and my Wife eventually had to leave. I was left on this long chair over night with all the loud sounds from the emergency department and all the lights. I eventually passed out from exhaustion.

The next morning they had a bed for me in the emergency department where they did tests on me and fed me a sandwich. My Wife eventually arrived and was able to be with me. I was taken into a small children's room to get some bone marrow taken and given the green whistle. The nurses and doctors were all friendly but as soon as the needle was put into me I sucked hard on that whistle, which tasted like paint smells. Eventually that ordeal was over and I was moved into the hematology department into a bed and a room to myself (after many tests including heart scans and X-Rays). I was introduced to the Doctor and his team who explained it was Acute Myeloid Leukemia and explained about chemo therapy. It was organised for me to go to Concord Hospital in Sydney, to store semen for the future as chemo has the possibility to make you sterile. They wanted me to go three times, however I only went twice and it was enough to get the amount they needed. I began my chemo the next week. One called 7/3 or 3/7 or something. One was attached 24/7 for 7 days while the other took about 15 minutes and was bright pink and changed the colour of my urine and making me, cytotoxic. I managed to make it through the chemo, though it gave me some bad nausea and I began to struggle with the hospital food to the point where I was barely eating.

My friend and often hiking buddy Tristan straight away offered to donate his bone marrow. I told him they will only test close family and he went and signed up at a registry anyway. He also started a go fund me page for me, which I insisted I didn't need (not wanting to take peoples money). He didn't care he said it was for peace of mind seeing as I would be off work and just to ease that mental stress about bills. I told him no one would donate anyway, but he promoted and even shaved his head and vowed to quit smoking if it reached it's target (which it eventually did).

I also got back in contact with my estranged Mother, telling my Wife life was too short to stay bitter about the past.

I tried a video call early on to see my Dog, but it just broke me and I began crying.

A facebook memory came up of me visiting my Aunt Corinne in hospital 3 years ago to the day as she was in for Leukemia too. This made me very sad as my Aunt had died of sepsis.

8th September 2017

The dietitian eventually saw me and changed my menu to the 'kids menu' and I began eating pies, sausage rolls and chicken nuggets with supplement drinks called 'ensures'. I was weighed and I had lost 7kg. After the chemo finished I felt a little better but began on some new medication to inhibit the cancer cell growth called 'Midostauren'. Which was fine at first, but the more I took it the more it progressively made me sick, to the point the smell of the pills made me want to throw up. However I finished my treatment of those managing to keep them all down. Soon my hairs began to fall out, starting with my pubes and then my beard.



Soon my hair began to fall out as the Doctors talked about letting me go home for a bit before my bone marrow biopsy (to see how chemo went).


I began to struggle severely eating the hospital food as well as my mental health, being in a single room for a month and really wanted to be home with my Wife and Dog. Eventually I was released. For 10 days. Currently on my third day home as I write this, with much more in store for me and an uncertain future. Only wanting to beat this thing and enjoy my life with my excellent family and friends and enjoy the beautiful adventures life offers.

By the time I got home I was so excited to see my Dog, however after a month she didn't seem to recognise me and I had a breakdown, crying, my most extreme one yet. Being home I could just think about how much I had to lose and how badly I wanted to beat this thing. It was my lowest point yet.

Eventually I calmed down and tried to focus on just enjoying being home with the family, and finally shaved my head.

I need to defeat Superman

I have to go back in today for a blood test (to see if I need any blood transfusion or platelets), Friday for the same (plus my PICC Line bandage change), Monday for the Bone Marrow Biopsy and then backin hospital Wednesday for more treatment. There's a lot ahead and I'll keep everyone informed and we can just hope I can beat this and be back out on the trails having a Steventure. But for now I'll enjoy the quiet time with my lovely Wife, cute Dog and just watching the new Jurassic Park cartoon on Netflix.


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Thanks for reading! - Steven