Welcome home, stem cells!

Day 4 of the stem cell transplant and nothing much to report apart from some severe boredom. My neutrophils have only just hit rock bottom, but so far, so good.

I've been in hospital about 11 days now so you could say I've made myself at home. In typical Beth style, I didn’t realize that I was going into hospital until the actual day. Here I was, thinking I had an extra night free in the real world, when the plan had been to admit me Tuesday night and get things rolling early the next morning. Smart move really, because the nurses probably knew there was no hope in hell I would be getting up early (after four weeks of delicious sleep-ins) and beating peak hour for my 8.30am appointment.

The appointment was to get an ‘arrow’, or central line, inserted in my neck/chest area, which would give them a port through which they could administer the chemo. VAScath, PICC line and now an arrow – as far as lines go, I’ve had them all. And the same young female surgeon, who patients tend to mistake for a nurse, has done them all. We met again, like old friends, this time for the last time. She was very impressed by the results of my last PET scan; she had been quite taken aback by the size of the tumour of my very first scan in London. These kinds of reactions from medical practitioners are all just small reminders along the way that I am basically a walking medical miracle.

So chemotherapy drug no. 1 was a little something called Carmustine. I don’t know if they started with the worst first on purpose, but this drug really hurt. Luckily I slept through half of it because the half I was conscious during was so horrible I wanted to rip the drip out and be done with it. Basically the drug has a high alcohol content, so while it is going in it feels like you are on some kind of horrible bender (without the fun, going out part). For me, my eyes went bloodshot, my mouth and throat burned and I felt nauseated and extremely uncomfortable, to the point that when they offered me morphine, I didn’t say no. After about an hour following, the pain and discomfort subsided. Apparently heavy drinkers usually experience few side effects from the drug, so I guess those several months off the booze have softened me up a bit. :)

The following day was a rest day (though I did not plan on doing much resting!) and I was allowed out all day. 25 degrees, blue skies, a wonderful day in Melbourne. I spent it being a tourist in my own city, enjoying panaromic views of the city from Eureka Tower, going out on ‘The Edge’ – the glass-walled box that pops out and gives you a perspective of the city from all angles, even through the floor. It was a bit underwhelming to be honest, but my cousin’s daughter Jolon loved it so it was worth it.

We survived The Edge!

The day was finished with a light dinner in Federation Square, Swanston Street lit up magically for the comedy fest; the night perfectly balmy and still. A gorgeous night to be out in Melbourne. Pretty hard to go back to hospital after a day/night like that but it had to be done.

The next morning I got to go out for another walk across Collingwood in the glorious sunshine, before being hooked up for my second dose of chemo, the etoposide. This was pretty uneventful really – a couple of large bags, nowhere near as painful as the first day.

The next day was another rest day which I would be spending with a couple of my oldest friends, Fleur and Nicole. I met up with the girls at Southern Cross station before heading across to Edinburgh Gardens for what I had planned to be a small picnic (as it was yet another stunning day in Melbourne). When I arrived at the gardens, I noticed my cousin in-law with his young daughter at the playground. “No way, how uncanny!” I thought as I went over to say hello. Paul said he was at the gardens with my cousin (his wife) Sonya and pointed me towards her group of friends. I looked at the group. “That girl looks just like Jacqui!” I said, recognising the head of white hair among the group. As I got closer, I realised it was Jacqui, and that the people surrounding her were also several family members and friends! My family had organised a surprise picnic for me. Needless to say, this was yet another great day.

Sunday was my last day of chemo (hopefully forever!). I was given cyclophosphamide, a drug I have had before with my original R-CHOP regime, but this time I was getting 15 times the amount. The cyclo can be harmful to the bladder if it is retained in the system, so I had to be given a stack of fluids with the drug. They had to make sure I was peeing it out, so I was given ‘wee juice’ (lasix) several times which kept me going to the toilet. It’s funny how well-acquainted you (and the nurses) become with your bodily functions when you’re sick.

Monday everything was catching up with me. I could feel the drugs washing over my body. I felt dull and flat, and I was starting to realize how long and boring this was going to be.

Tuesday was a momentous day though: the day I got my stem cells back. That morning I was allowed out for a big, healthy breakfast and wandered around East Melbourne, enjoying the beautiful autumn morning; the orange leaves against the brilliant blue sky. When we got back, the little ‘spa bath’ for the stem cells was set up. 23 million of my stem cells, in three bags, were drawn out of a frozen capsule. They resembled frozen salmon. The bags were then dipped into the pool, thawed and hooked up to me via a drip. It’s amazing how simple the whole procedure is, considering it is life-saving technology.

The only side effects I experienced were a funny taste in my mouth from the preservative, which could be remedied by sucking on boiled sweets, and a tickling in the back of the throat. The stem cells have to be administered quite quickly, so before we knew it, the three bags were done. Stem cells, returning to their home, where they would grow and develop new babies – new blood cells.

So four days have passed since then, and now I’m just waiting. For the inevitable … the symptoms to set in – the sickness, discomfort, fatigue, fevers (90% of people on this therapy get an infection). It’s hard to know what to expect because I feel pretty good right now. My main problem right now is boredom and a lack of interest in the hospital food. But it’s early days yet. The lady I am sharing a room with is on day 9 of her transplant, and she is not in very good shape right now. I woke up to her crying this morning; and her day since then has been full of doctors and tests. But every person's journey is different and I'm not going to try to compare my situation to anyone else's. 

On a much more positive note, my amazing sisters and other members of my extended family have decided to participate in The Ride To Conquer Cancer in support of Peter Mac. I can't speak highly enough of the level of care I have received at this hospital - we are so, so lucky to have something like this in Australia. I'm not sure if I'll be up for riding, but I will definitely be taking part in some capacity. You can offer your support here.

A change of tack

In spite of the crappy circumstances, there have been some blessings about coming home. I felt I left London too early, but so many moments since my homecoming have left me thinking ‘God I’m glad to be home’.

And the number one reason is family. These are people that you can’t replace, no matter how far across the world you travel. Coming home meant I got to spend a week in Wollongong in a (peach-coloured) houseful of crazy Dortmanses in the lead-up to my cousin Jamie’s wedding. I honestly felt that week and the wedding was something I will remember for a lifetime.

So this wonderful week of reverting to adolescence, waking up to the beach every morning, playing boisterously loud board/card games, rolling around in laughter during charades, having a girls’ day out in Sydney, watching the crazy Dortmans crew leap out of a plane during an impromptu skydiving mission, regular and inappropriate use of the term ‘Code Brown!’ and ridiculous sunburn culminated in the event of the century, Jamie and Ana’s wedding. I teared up a few times, as did the groom ‘I had something in my eye’ Jamie and many others.

Back home, it was straight back to reality as I was again thrown into the well-trodden routine of doctor’s appointments, blood tests and X-rays, closely followed by my third cycle of chemotherapy. The following weekend, I had the honour of attending another wedding, this time to celebrate the marriage of my friend Brooke to her beau Jason. Great day, one that left me feeling similarly warm-hearted and loved up.

At this wedding I happened to meet an inspirational lady named Jan. She came and sat beside me and told me that we had something in common. Neither of us had realized it at the time, but during the chapel ceremony, I had sat right beside her, the only other person in the whole room with a wig on. Jan had breast cancer and was currently undergoing chemotherapy, however, she had been told there was nothing more that the doctors could do, and the cancer would eventually get her. My heart went out to her, but she was handling it like a trooper, living in the moment, saying and doing what she wanted. She grabbed my hand and told me I would live a long and healthy life, she could feel it. “My children say I have a sixth sense about these things,” she said. Jan knew she was closing in on the final chapter of her life but she was full of zest and positive energy.

Don't you love weddings?

My third cycle, compared to the previous two, was a walk in the park. It was almost too easy. I spent a week in Melbourne, seeing it through a whole new set of eyes, feeling like a tourist all over again. Catching a tram was an exciting adventure; catching a glimpse of the MCG on my way in filled me with nostalgia, wheeling my bag through a now-complete Southern Cross Station, visiting pubs and seeing faces I hadn’t seen for two years, spending a sun-filled day at the Aussie Open followed by dumplings at Chinatown and a lemonade in a leafy beer garden, feeling like I had stepped back in time at Labour in Vain on Brunswick Street, attending a backyard barbecue and visiting Edinburgh Gardens for Aussie Day ... but this was the calm before the storm.

Until that day: Wednesday, the day of my PET scan, which would establish exactly how much cancer still remained in my body. I think I was a bit nervous about this; I hadn’t slept properly for the two nights prior but I think this was more to do with the extreme heat of the Melbourne nights and the many sugary, caffeine-laced drinks I had consumed ­– though there could’ve been more going on subconsciously than I thought. Mum, my right-hand woman, drove up from Gippsland to take me to Peter Mac in East Melbourne, where the scan would be taking place.

The last PET scan I had received had been in London, before my diagnosis. I remember that day vividly; it was a real reality check for me, and it was the first day I actually felt the full burden of what I had to achieve. I had seen a scan of my body, and I had seen cancer splashed all over it. Well PET scan No. 2, now taken at the ‘halfway’ mark, after three cycles of chemotherapy, was a similar deal. My optimistic and somewhat complacent view was dashed a little that day, as again I was confronted with the formidable task I was facing.

The process of the PET scan was pretty much the same; I lay on the bed, they injected me with radioactive ‘tracer’, left me for an hour, then I lay down on the bed and was passed through the giant whirring donut. After that I really only had time for a coffee before heading off to the clinic to see the oncologist, a professor who had been following my case closely even before I left London. He had also been advising my oncologist in Gippsland. I was looking forward to meeting him.

The doctor was a gentle, tall and thin man who we soon discovered had a magical way of explaining things clearly and patiently. Mum and I instantly liked him. He sat us down and after getting the mundane details out of the way like my medical history, diagnosis, chemo symptoms and the like, he pulled up a seat in front of us and addressed us very clearly. I could tell almost before he opened his mouth that this was not going to be the best news.

He explained that at this stage of treatment, if my current chemotherapy (R-CHOP) was to achieve a cure, then the PET scan would be clear of all cancer cells. If the PET scan was clear, there was an 80% chance of reaching a cure after the full treatment. If there was still lymphoma showing up on the scan, the chances of a cure decreased to 20%. I fell into the latter category. By comparing both scans on screen, we could see that what had once been a giant, blazing red lump stretching across my chest (the red on the PET scan showing the ‘most active’ cancer cells) was now a much smaller green (green = less active) blob. (Basically, it had gone from the size of a bowling ball to a cricket ball). The chemotherapy had made a significant reduction, but it wasn’t enough.

The oncologist explained to me that if I continued on the current R-CHOP regime, it was very likely that the cancer would grow, and eventually lead to my death, possibly as soon as 12 months. A doctor had never been this direct with me before and I felt like I was stuck in a slow-motion nightmare. After saying this, he paused. I tried to remember to breathe.

 “Are there any other options?” I squeaked.

“Yes there are,” he replied with confidence. He warned me however, that they weren’t going to be easy, but they were going to give me the highest chance of a cure.

The next plan of attack was to move onto a much more intensive chemotherapy called the ‘B cycle’ (Hyper CVAD). Under this regime, all of the symptoms of my current chemo would be increased by 30%, and would also make my white blood cells decrease for longer periods, leaving me at higher risk of infection. After two B Cycles, which go for roughly three weeks each time, I would get another PET scan, and there was a 90% chance that would come up clear. However, the chemotherapy would devastate my body to the point that it would destroy my body’s ability to produce stem cells, which produce the body’s blood. Therefore at the end of treatment, I would get a stem cell transplant.

The stem cell transplant is going to be difficult; it’s a reasonably new, high-risk procedure and the recovery is long (up to a year). They will use my own stem cells, which they will be collecting this week (via a machine that takes my blood, extracts the stem cells, then returns the rest of the blood to my body). These stem cells will then be stored until the end of my chemotherapy treatment, when they will put them back into my body again. For three weeks following the transplant, I will be in hospital, mostly in isolation, while the stem cells grow and develop. It will take 3-6 months until I can lead any kind of semi-normal existence again, and up to a year until I feel 95-100% (though I may never feel 100% again).  

You can imagine how hard this news hit us. I guess for me, it was another massive reality check: this thing is big. When they found it, it was all over my body, around my heart, lungs, stomach, liver, everywhere. And right now we are embroiled in a race: it’s the chemotherapy drugs vs the lymphoma, and the cancer has made it clear that it’s not going to budge easily. This lymphoma might be stubborn, but so am I.

Eyedrops given to me while in hospital - couldn't be more aptly named!

Two days after my scan, I was admitted to Peter Mac (who will be overseeing my treatment from now on), for my first dose of Hyper CVAD. As many of the drugs need to administered over 24 hours, or at strict times, it is not logistically possible for me to receive the chemo as an outpatient, so I am required to spend the first 4 days of chemo in hospital. This is never fun, but it was made slightly more bearable by the fantastic medical and support team there; I feel like I am in safe hands at Peter Mac. Furthermore, it has also driven home the fact that I’m not alone, as I was surrounded by patients going through similar things.

My drip monitor, affectionately known as 'Big Bertha' which I was hooked up to for four days ... was glad to let her go

I’m now a week into chemo and tomorrow I head back to Peter Mac where they will carry out my stem cell collection. This chemo has already proven a lot harder than anything I have previously encountered. A couple of days ago I had constant ringing in my ears, neck and back pain, burning throat, chills, sweats, heavy arms; I couldn’t even get myself out of bed or eat anything. I felt like the drugs were completely consuming my body; that I was fading away underneath them. I feel frustrated that I have no energy and sometimes even simple tasks seem beyond me. But it’s something I have to deal with and I always have to keep the ‘bigger picture’ in my sights. While recent events have brought me back to earth with a resounding thud, the prognosis remains clear: we are working towards a cure. The outlook is as positive as it was, it just means it's going to be a harder road to get there.