RETURN OF THE STEM CELLS

I can honestly say that in the two years I’ve been dealing with my cancer diagnosis and everything that has come with it, this has been the most difficult part of my journey so far. Following positive scan results, I was told my stem cell transplant would be going ahead. It was a bit touch-and-go at this point as I had the phone call saying it was all go and I hadn’t even thought about packing yet. I had 30 minutes to pack my life into a suitcase before I was needed on the ward to start my conditioning chemotherapy. Leaving home was really hard! I didn’t know what was going to happen to me, I didn’t know when I would be home again, it was like plunging into the darkness and not knowing anything at all.

My admission date was day -6 for me, where I had a heavy dose of Busulfan every afternoon for four consecutive days, ahead of a Melphalan infusion on day -1. The high dose of chemotherapy is given to obliterate everything, good and bad. It is only possible to give these doses when a stem cell transplant is to be done straight after, without this a person would not survive the chemotherapy. All the chemotherapy went well and I didn’t suffer any significant side effects which made me pretty comfortable leading up to my transplant. At this time I was finally familiarising myself with the routine of the ward. My day began at 4 am. Yes, you read that correctly. At this horrendous hour, the nurse would come in to draw several vials of blood, for the results to be back in time for the doctor’s rounds. I could then return to sleep until 7 am when the HCA would come in with the scales and weigh me. Then just as I drift off... breakfast is served and the nursing handover begins.

Day 0 was THE day - my “birthday,” as we patients call transplant day. As expected, receiving my stem cells was a very uneventful/anti-climactic process where they thawed and infused my previously frozen stem cells back into my body via my portacath.

Over the next few days, I was hit hard with ALL the side effects! My neutrophils dropped, I was severely nauseated, I lost my appetite and A LOT of weight, I became very fatigued, my mucositis worsened and my hair fell out. Most foods became quickly unpalatable so on day +1 it was decided I needed a nasojejunal tube inserted for supplementation because my nausea was so bad. The next few days seemed to all blur into one. Day +7 bought with it some excitement, blood noses, spiking temperatures and NJ tube blockages. This night was possibly the worst of them all, but after this things seemed to even out for me and my transplant engrafted not long after. At this moment I could see the end of this experience and I knew I was on my way to being discharged sooner than expected.

In the hospital, I knew I was safe and I knew that if I felt unwell, I would get immediate treatment. Room 16 had been my safe place for 23 days and now it was time to leave my little bubble and continue my recovery at home. It didn’t take me long to settle back in at home and I was incredibly happy to be reunited with Otten... who still hasn’t left my side since! What I did not anticipate was the emotional and physical struggles I have continued to endure over the following weeks. I realised that while I was in hospital I was too busy living day-to-day, anticipating the next side effects and how to manage them, trying to maintain a positive attitude and distracting myself from my present reality. The fatigue was on a level much more intense than anything I had previously experienced. Slight physical exertion, like simply taking a shower left me panting and feeling exhausted.

By the third week, I gradually began to regain some strength and energy. I began to move my body by taking walks and starting some gentle yoga. During this time I made numerous visits to the hospital for blood tests, fluid top-ups and magnesium infusions. My appetite began to return, but very slowly! All positive signs that I am on my way to making a full recovery.

I am now a few days out from “the big scans” and scanxiety has well and truly set in. I don’t usually give my scans this much attention but these are to see if the stem cell transplant has done its job. The end of another treatment and approaching progress scans always makes me feel like I’m back at the beginning of this roller coaster, starting all over again. I believe I feel this a little for every new treatment I start. Evidently, I’m not really starting again, far from it in fact. It has been a long and rough road, but hopefully it will be well worth all the physical hardship and suffering.

Until next time,

Chi x

THE GOOD, THE BAD & THE UGLY

Well, it’s been a total of 162 days since I last posted on my blog so let’s get back to where we left off. I had just completed a 5-day course of radiation and we were waiting for another review to decide on the next step moving forward. After a lot of deliberation between the oncology and haematology teams, it was decided that they would consider treating me with an autologous stem cell transplant.

Autologous Transplantation: In an autologous transplant, the patient is their own stem cell donor. The patient’s stem cells are collected in advance and then returned to them after they receive high-doses of chemotherapy.

Autologous transplants aren’t routinely used in unique cases like mine, however, both my oncology and haematology teams advocated enough for me to be given the opportunity. So, off I went and completed all the elements on the ‘pre-transplant workout’ - including x-rays, an MRI, heart and lung function tests, PET-CT scan, dental examination, blood tests and, of course, the stem cell collection itself.

The stem cell collection process was relatively straightforward as my stem cells were harvested peripherally via my central line. Leading up to the collection I needed to give myself G-CSF injections twice daily to help mobilise the stem cells into my bone marrow. Regular blood tests were taken over this period to help identify the best day to start collecting cells. When it was time for me to collect, I was connected to an apheresis machine that separates the stem cells from regular blood and collects them. I was continuously on the machine for five hours, repeated on two days. These cells were frozen and stored until they are needed for infusion. Phew! All the hard work is done until transplant day, BUT WAIT… for me, it’s never been that simple.

The final step before going ahead with the transplant was down to the result of my MRI. Unfortunately, the MRI revealed new spots or active cancer so therefore the transplant was a less viable option until the cancer was in a stable state. This news destroyed me and a part of me felt like I had disappointed everyone, that my body had let me down again and my life would be put on even-further hold yet again. These roadblocks along the way have only reminded me of the reality that nothing ever works out the way we want it to. The best way to sum up that experience is in what someone once said to me early in my journey and has stuck with me since; nothing is ever impossible, and I am proof of that.

Moving forward we prepared for my third chemo regime, hoping it would knock the cancer back and prepare for a re-boot before having the transplant in the near future. The proposed chemo regime was 4 cycles of Temozolomide (oral) and Irinotecan (IV infusion) that ran over 5 days which was repeated every 3 weeks. It was a tough few weeks getting back into the swing of chemo, managing the chemo hangover and re-introducing myself to all the medications. Although embarking (and then enduring!) chemo has its obvious limitations, I tried to stick by my mantra and not let cancer stop me from doing anything and being anyone. It may sound crazy, but in keeping-on-living-on and undertaking new life experiences and challenges I have been able to prove so much to myself, as well as (I hope) inspired others around me that sometimes it is as simple as ‘you can do anything you set your mind to!’

It’s fair to say I’ve had a busy five months starting with:

1. Welcoming the fluffiest member of our family, Mr Otten (and then undergoing puppy potty training!).

2. Being selected as an ASB Marathon Ambassador. Unfortunately, I was unable to participate after only having chemo two days prior to the event, but I was lucky enough to have the opportunity to hand out medals at the finish line.

3. I can now say I’ve white-water rafted the Kaituna River that includes the highest commercially-rafted-waterfall in the world. I had an absolute blast as you can tell by my face!

4. Numerous graduations for friends were celebrated and I even attended the Medical graduation ball which was the first time I had dressed up in A LONGGGG TIME and boy did I love it!

5. I launched Cancer Chicks NZ - a group for girls to support each other and help strengthen the community of young women dealing with cancer.

6. I completed 4-cycles of chemo and was then told I needed to do an extra cycle to get me through the festive season. The last one completely took it out of me, proving to be one of the worst cycles yet.

7. Continued to make the most of summer and even managed to celebrate another Christmas with my family in between hospital admissions. However, New Year’s was slightly less lucky, but in many ways, it was the luckiest New Years as I got to share an epic evening on Ward 64 at Auckland Hospital surrounded by some of my favourite people - absolutely no complaints there!

January 2020 marks the six-month milestone since my world became a fight for my life (again). It’s fair to say this cancer journey throws in a few curves balls now and then, some you will be aware of and expecting, whilst others catch you completely by surprise. I’m not sure which ones await me in this next phase but living through a very turbulent five months has only added to these times being some of the most fulfilling months of my life! I now type this blog post as I begin my stem cell transplant treatment. For the next wee-while you will find me at the Motutapu Bone Marrow Transplant Ward at Auckland Hospital, in a room decorated by fairy lights, nearly the whole isle of the organic foods from your local supermarket in my fridge and pictures of family and friends (and Otten!) plastered on all the walls.

I have made this place home as I settle in for an intensive regime of chemo followed by my autologous stem cell transplant. I am warned and reminded daily that this is going to be the most difficult phase of my fight yet - but here I am, doing it, and setting new benchmarks for cancer treatment in New Zealand. If the last five months are anything to go by, I am going to make the most of each of these days and show cancer what I’ve got!

THE RELAPSE

To those of you who aren’t aware, in October 2018 I finished 11 cycles of gruelling chemo for stage four Gastroblastoma and in November received the news that every cancer fighter hopes to hear – the start of remission. Remission was reached and I have spent the last eight months celebrating and learning to love and accept this new normal, or as I prefer to think of it as ‘The revolution of Chi.’ I had started to plan and book things for my life after cancer, this included finishing uni, holidaying in Europe, running as an ambassador for the ASB half-marathon and now it's all on hold...

A few weeks ago I thought I'd better contact my GP to finally confront this lingering pain in my leg that had come on after training for the upcoming half-marathon. For cancer muggles - this isn't as straight forward as it sounds. It's terrifying and traumatic as it feels very similar to the initial appointments you once made, however now the "I'm sure it's nothing" voice in your head has lost all credibility. This is incredibly real for anyone who has been through cancer, and a confronting part of everyday life after treatment. Our bodies that once felt strong, healthy and indestructible are now riddled with trauma as we second guess every single ache and pain. After being sent for numerous scans I was told that my MRI had shown a relapse.

noun

noun: relapse; plural noun: relapses 1. a deterioration in someone’s state of health after a temporary improvement.

The reality of the situation is I am devastated, beyond belief. I sat in front of my consultant and my heart sank... I didn't dare look at my parents as I could hear the sniffles and I had to keep my brain working to ensure I could soak in everything he was saying. The cogs in my head are turning as he shows me the results of my recent MRI. This time the cancer is back in my sacrum. Listening intently and holding back a flood of tears I hear the initial plan of action. I had to start a 5-day course of radiation to help alleviate some of the pain. Radiation is now complete and the pain has improved significantly! Luckily I've had no serious side effects which is a welcome change from the daunting chemo hangover. Now we are waiting for another review to decide on the next plan for treatment.

The word relapse has occupied my mind over the last few weeks but relapsing makes it sound like the same thing is happening again, but this couldn't feel more like a whole different ball game. First time round it was decided I'd start chemo to shrink the cancer before having surgery, followed by more chemo. Although it didn't go entirely to plan, I felt like I was finally starting to get better. Slowly but surely I was getting my strength back, I was exercising more, my hair was growing, I was back at uni and looking forward to graduating, I had holidays all lined up and most importantly I was just starting to feel like myself again. It just feels so ironic that as the chemo side effects had worn off and I am starting to feel better, I was actually still sick and the cancer was growing inside me.

All I feel is an overwhelming explosion of emotions inside me, some reasonable and some unexplainable but instead of focusing on the negative I am going to try and do what I do best and that is to find the positive in every day. When I was initially diagnosed I decided I wanted to be involved within the community to raise awareness and give back where I could, and through this, I have been lucky enough to be a part of many exciting opportunities - the half-marathon being one of these. This year I will be running (or walking) as a Charity Hero for The Cancer Society. If you've always wanted to take part in the Auckland Marathon, why not join our team?! Or if you're wanting to support me and donate to an incredible cause, please use the link below https://aucklandmarathon2019.everydayhero.com/nz/chichisquad

So after an unexpected few weeks, here I am now celebrating the fact I beat a cancer I never thought I could, yet I’m grieving over a relapse and completely terrified of the new unknown ahead.