Stem Cell Transplant

 Warning: Contains Graphic Content

In August 2020 I was diagnosed with Leukemia. After my first round of chemotherapy I was in remission but still had to undergo another 2 rounds of chemo. In the meantime I saw a specialist from Sydney who advised my best option was a Stem Cell Transplant, given the type of Leukemia I had they believed it would probably come back unless I had this done, and that it had a 70% chance of getting rid of the cancer for good, with a 10% chance it could kill me. After my third round of chemo I was released from hospital on the 30th of November, my Wedding Anniversary. The initial round of chemo really effected me, both physically and mentally, but I coped much better with the following two rounds, finding myself bored in the hospital and just wanting to go home.

While in there my parents and 2 of my brothers were tested to see if they were matches for the Stem Cell Transplant (my youngest brother wasn't tested as we are estranged, and he apparently laughed when finding out I was diagnosed and consistently wished for my death, brotherly love huh?). My brother Scott was a 100% match but they decided against using him due to his schizophrenia, instead saying they had found a Male, German donor who was a good enough match (11/12, markers I was told).

When I finally got home I was feeling pretty good, and realised how low on energy I had been feeling leading up to my diagnosis, including on my Mount Jellore walk with my friend Tristan. I went on a few hikes while waiting for my Stem Cell Transplant, including Barren Grounds and Gibbergunyah Reserve.

I had received a private instagram message from Ethan Zohn, winner of Survivor Africa (season 3), wishing me well on my treatment and letting me know I would crush cancer (Ethan himself having been through a Stem Cell Transplant twice). I finally got my date to go in for the transplant, and worrying I would die without ever getting to go on Survivor I bought myself the poorly received video game for the Nintendo Wii.

What a Fanboy

Finally I went in for the treatment, making my way up to St Vincent's Hospital earlier in the morning to get a CVC (Central Venus Catheter) placed in my neck.

After waiting around all day for my room I was told the person was feeling to unwell to leave the room, and so I was sent to a different ward to find a bed for the night. I was instantly placed into a shared room filled with degenerate druggies. I quietly asked the nurse if I could speak to her outside, telling her that I did not feel comfortable staying in the room with these guys and that I was more than happy to just drive home, and come back up tomorrow for my room. However they did not want to let me do that due to the CVC in my neck (even though I had been at home for weeks on end with a PICC in my arm during my previous chemo). I insisted I would rather sleep in the hallway, feeling more comfortable there, then in the room with them (I've had bad run ins with junkies in the past).

The head nurse soon moved me into a reserved private room that was literally the next room over that was just being reserved in case of emergencies. I spent the night there, actually able to sleep without fear of getting robbed and was moved into my room in the cancer ward the next day to begin my treatment. I was given a breakdown of my treatments by day on a paper form so I could know what the days were set to entail.

I found the food in the hospital to be much more palatable than the food from Wollongong, (which I had a breakdown about when I returned home after my very first round of chemo).

I began gaining weight rapidly due to all the infusions being pumped into my body and very quickly found myself above 90kg (as my blood counts and weight where being recorded each day on a white board in front of my bed).

Chungus

The day finally came around. Day Zero. Stem Cell time. It happened really fast and with no fuss, just like a blood transfusion. I felt like I was fine after it, but soon after, the diarrhea began. I can't recall how long it took after, but holy mother of hell it was bad. I think when it began I was going 15 times in a day, it was like an acid hose shooting out of my asshole. They soon put me on some meds to try and stem the flow, but it didn't seem to help that much, as my asshole got more and more sore, from both the acid spray and the constant wiping.

Soon the fevers and what the nurses called the 'rigors' began, getting so cold my body would uncontrollably shake and spasm and no matter how many heated blankets were placed on top of me I could not feel warm. I had to get X-Rays and blood tests looking for infections but none found anything as these fevers continued to happen, one night sweating so much my bed was drenched and I had to have my bedsheets changed 3 times in the one night. Eventually the Doctors decided they were worried it was my CVC and so it was decided I would get a CVC placed in the other side of my neck and the one I already had in would be removed.

They also wanted to give me a feeding tube, as apparently many people going through Stem Cell Transplant get mucositis, which is like ulcers in your mouth, throat, stomach making it too painful to even eat. I agreed at the behest of the nurses and dietitians even though I had been having no problem eating as of yet. Having it put in was the most painful thing I've ever experienced (and I've had a bone marrow biopsy while awake with the green whistle twice), they injected me with morphine but I didn't really find it to help the pain which was so unpleasant, within a day they had to take it back out and just hope for the best with me.

Soon the mucositis began, and I could feel that the fruit juices I was getting every day began to burn and sting as I drank them.  I tried to eat, but I found it a struggle among the nausea, diarrhea, fevers and mucositis I wasn't consuming very much. 

My hair then began to fall out and rather than wait till I was released, I asked a nurse and she shaved my head for me. 

As the fevers began to get less frequent and the diarrhea began to settle the mucositis got even worse, to the point where I was almost unable to eat. It didn't help the chemotherapy had ruined my taste buds so everything tasted awful too. The doctors tried injections of morphine as well as oxycodone pills before eating food to try and help me be able to eat, as well as milkshake like food supplements.

It got to the point where I was only able to eat 2 minute cup noodles, as they didn't seem to hurt my throat, so I had visitors bring them in to me, but as to not run out I was only eating 1 cup of noodles a day and still keeping the weight on from my constant infusions. I began to feel really weak, and run down just from my dietary input. As the doctors started talking about my release.

Upon release I would have rent free accommodation at the Quest in Bondi Junction. I was feeling so shit that I didn't believe I should be getting released. I had a test walk around with the physical therapy girl and a ride on a exercise bicycle and was told I would be getting released, but would have to travel to a local Sydpath Pathology for blood tests twice a week as well as come in for regular check ups at the Kinghorn Cancer Centre. I had my CVC taken out and was a little excited yet apprehensive about being released, but soon found myself loving the accommodation, being able to relax from the noise of buzzing and beeping.

At The Quest, Bondi Junction

I began to finally get meals, and start getting some nutrition in my body, and although my taste buds where all messed up so nothing tasted any good I believe it did my body well.

It was decided that my Wife would stay up for the first 2 weeks with me, then my Dad would stay for 2 weeks and then my Wife would return.

After my first week I was finally able to remove the bandage of the holes on my neck from my CVC.

Leading up towards the end of my Wife's stay (the Easter long weekend) I began to get incredible pain every time I went to the toilet. This pain continued for a few days before little flecks of blood began to come out. 

At first I assumed I had kidney stones but my Doctor worried it might be a virus that can stay active in your body and could be causing it. The flecks of blood soon became bigger blood clots I had to pass, and even sometimes my pee would have have blood in it. Soon I was not having to pass blood, but big mucus like globules, some as big as marbles.

Gross as fuck right? Imagine how I felt.

 The Doctors decided to re-admit me to hospital on Thursday, the day before Good Friday as they were concerned with anything going wrong over the Easter Long Weekend.

In hospital they wanted to insert a catheter into my penis so that they could clear out my bladder from any potential blockages. The Doctor tried to insert it, in what was probably the most embarrassing moment of my life. My penis was like a horse penis, and not in the good large way, in the way where it wanted to retract completely inside my body (like a horses penis) out of fear. The process was painful, and ultimately unsuccessful as they couldn't get it into my bladder correctly and had to take it out (as the pain from the clots made me need to pee frequently, even though barely anything would come out).

My nutrition began to struggle again as I found the hospital food less palatable this time and struggled to eat, living off a piece of toast a day and some cans of lemonade. After an ultrasound of my bladder to check for potential blockages, they had decided that my bladder wall was shedding either due to the chemo or the virus. They decided they were not going to proactively do anything to help, so feeling annoyed with being in hospital I signed myself out, content to deal with the pain in the accommodation.

My Dad picked me up, having now swapped with my Wife and over the next few days the bleeding began to slow and eventually stop. 

Me and all my medication (I got that shirt in Finland)

My taste also began to slowly return and I tried to get out on a walk and do some exercise and spend some time in the sun. Going for a walk one day with my Dad down to Centennial Park.

My Dad found the accommodation pretty boring, so he would often go for big walks while I sat around flicking through the TV, finding a routine of watching trivia shows started with The Chase (UK), Think Tank, The Chase (Au), Mastermind, Jeopardy and the night it was on, Hard Quiz.

My Dad swapped with my Wife after his stint was done and we continued the monotony of life in the accommodation which we had began to find incredibly stifling (as my Wife had to work from home within the small confines of the accommodation). At some point during this time I had to get a Bone Marrow Biopsy done, while awake, with the green whistle. My Doctor saw my Wife and I afterwards and let me know that I had the glandular fever virus according to my blood test results, and that due to being on an immunosuppressant drug (to not get Graft vs Host Disease), my body wasn't fighting it off causing it to spread and become a type of Lymphoma. My Doctor insured us not to stress, as it is something that can occur with Stem Cell Transplants and that the counts had gone down a little so there was the chance my body would fight it off.

On the 22nd of April 2021 I was able to leave the Quest and finally return home, and 2 days later we celebrated the 2nd birthday of our gorgeous Dog.

Orla

Not long after being home my Doctor called to say they wanted me to go for a PET Scan so see about this Lymphoma. So I  travelled backup to the hospital to have a PET Scan which should the inflamed Lymph nodes throughout my body. My Doctor said they would put me on a 4 week treatment of a thing called Rituximab to fight this off, insuring me that she believed that this was all that was needed to get it under control. 

It was a pretty boring infusion, and very slow on my first treatment, increasing in speed after that, once they knew I would have no adverse reaction. While at home I focused on doing more family history stuff and binge watching Ancient Roman shows like Domina and Barbarians (and of course, Jurassic World Camp Cretaceous Season 3).

While talking about history with my Dad on the long trips up to the city we often drove past Kurnell, where James Cook first landed in Australia my Dad told me. After my third treatment with only one treatment left we stopped in at Kurnell on the way home for me to explore some local, and National History of Australia (regardless of how you feel about the history, it is still part of history).

After my forth treatment I had a following PET Scan, but was told to return to Sydney on the Thursday to see my Doctor for my results (which I was briefly told over the phone looked good) but also for my Day 100 post transplant catch up.

The night before heading up to Sydney, my stepmum called to let me know my Dad had been in a bike riding accident, having a head on collision with another cyclist, with a piece of the bike burying deep in his leg, so he was in hospital awaiting surgery.

The next day I saw my Doctor for my 100 day post transplant appointment. The doctor let me know my rituximab treatment had been successful and everything else was going well. We discussed that coming up in September I would receive all my childhood vaccinations and after that he would be happy for me to return to work. In the mean time I was told to exercise, get strong again and continue my recovery.

Now before I end my post I would like to ask people from whatever countries they belong to think about giving blood, as it can really save people's lives, but a big thing I would like to ask people to do if they can is to join a Bone Marrow Registry, which not a lot of people know about or even think about doing. If you live in Australia here is a link if you would like to register. I really recommend it as you could one day save someone's life. https://strengthtogive.org.au/register/

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Thanks for reading! - Steven

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.

If you have enjoyed this post, or my blog in general, please follow it, or like my page on facebook or follow me on Instagram. 

Thanks for reading! - Steven