Wednesday, February 22, 2012

Stem cells, phantom bugs and flowers

Life really is a fickle thing. One minute you're a seemingly normal, healthy person, with normal, healthy (and not-so-healthy) habits and duties. Decisions like 'Will I be able to make rent this week?' 'What should I wear to this party?' 'Where should I go for my next holiday?' dominate your reasonably carefree existence. How quickly a cancer diagnosis can change all that. Suddenly, your life is taken over by a big, heavy, threatening task that constantly looms ahead, and the hospital is not just a place you drive past every now and then, or hear about on the news. It's your second home. And every move you make, every change in your body is watched, monitored, discussed and documented. Every phone call or catch-up is to ask about your progress. And suddenly things like money, parties and clothes just don't seem to matter anymore.

I am very used to hospitals now. I've done the hospital circuit; I've been admitted to/received treatment at three in the UK and two in Australia. All of this has now brought me to the Peter MacCallum Cancer Centre in Melbourne. I’ve only been a patient with Peter Mac for a couple of weeks now, but already I know most of the nurses by name and familiarised myself with their individual quirks and nuances. I also keep bumping into some familiar faces among the patients, which is nice, though I am yet to meet a patient younger than me.

During my first admission to Peter Mac, I spent four days hooked up to a drip to receive my chemo. After that I got to go home for a few days. Those few days 'reprieve' at home were not particularly pleasant. I had some horrible symptoms that landed me in the emergency room on one occasion, and for the most part I felt helpless, weak, sore and completely flat and unmotivated. The days of painting, writing, editing, sorting through old belongings during my previous chemo were long gone. For someone who considers herself quite driven, this was difficult to deal with. I had no desire to answer my phone on some days. Depression suddenly made a lot more sense to me. 

Thankfully I was able to read though, and I voraciously consumed The Help (thanks Kate!) in a couple of weeks, which was really my own achievement over this time apart from the viewing of a few bad movies on Pay TV. 

On Sunday, about day 9/10 of my chemo, mum and I checked into our apartments next door to Peter Mac. The aim was that I would be close to the hospital so they could monitor me during my neutropenic phase and also carry out daily tests in order to collect my stem cells, which we had been boosting with daily injections of a hormone called GSCF. I was pretty much at my lowest point at this stage; I couldn't do much without feeling light-headed or short of breath. I didn’t even have enough energy to pack. After a restless sleep at the apartments, we were up early for my 8am blood test in Apheresis (the department in which stem cell collection takes place). I was feeling very rough. Just walking to the lift, out the building’s doors, then a few metres down to Peter Mac and back down the lift again, was really hard going. “Do you feel like you’ve been hit by a horse?” one of the Apheresis nurses asked me as I stood, or stooped, at the counter. They managed to find a vein (an arduous task for my arms at the moment), take the blood, then we went back to the apartment, where we would wait for a phone call regarding whether my stem cells would be collected that day or not. I crawled straight back into bed and slept soundly until 11am when Apheresis called me and told me not to bother getting up, because my bloods were too low, which explained my lethargic state.

That afternoon the dreaded happened. I checked my temperature (something I have to do four times a day now) and it was above 38 degrees; which generally means two things 1) an infection and 2) a hospital admission. I had also noticed something that looked like a spider bite or sting on my right knee, was becoming very, very swollen and red, and felt hot to touch. Every part of me wanted to be anywhere but in that hospital, but this was how it had to be. I was admitted at 8.30 that night, by which time, the lump on my knee was about the size of a golf ball.

So I settled in. The man in the bed beside me snored loudly. There's always a snorer - then the snorer gets discharged, and you feel relief, until the man across from you decides it's too quiet and works as a very effective replacement. It’s amazing though, I always manage to sleep reasonably well in hospitals. I don't know if the rhythmic hum of the drip machine and the medical staff and equipment moving around me that lulls me into a sense of sleepy security, but after three nights in hospital I didn't even know my night nurse’s name because I would always snooze right through her shift. 

Tuesday my bloods were still too low for the stem collection to happen, but they still wanted another blood test that day so they could monitor the trend. Getting blood out of me had been like getting blood out of a stone, literally. My veins had pretty much disappeared and most blood tests would require three or four jabs up my arm. Until I was able to be booked in for a port or PICC line, I had to endure the torture of nurses tying the rubber band around my arm until it felt like it was going to fall off, fingers pushing and pushing into my arm to feel for a vein, tentatively sticking in of a needle, sometimes failing to strike, sometimes succeeding. Blood sports!

The results showed my platelets (the blood cells that promote clotting) were low at 17 (normal counts are 150-400), which meant I required a platelet transfusion. A bag of yellow stuff resembling murky runny custard was hooked up to my drip, and viola! I had platelets, thanks to a range of generous donors. I was also given two blood transfusions as my red blood cells were also low (my blood type is B Positive! How fitting). My first blood transfusion, one that made me want to go out and donate blood, though unfortunately, my blood is no good to anyone now.

Wednesday morning heralded another dreaded blood test, but this one yielded good results. My blood counts were finally up, and my CD34 counts (the protein found in stem cells) were through the roof! It was about 350, ‘one of the highest they’d seen’ in Apheresis. “Lucky they were sitting down when I told them,” the nurse said. They were even gobsmacked enough to ask her “Are you sure it’s her blood?”
So Operation Stem Cell Harvest was on. First I had to go down to radiology and get a Vas Cath – a long tube that is surgically inserted into a large vein in my neck. It was a rather uncomfortable procedure carried out with some local anaesthetic, but they did the job, and then I was off to Apheresis, who couldn't wait to dip into my stem cell goldmine.
My Vas Cath. Frankenstein-esque

In Apheresis, I was hooked up to a giant machine via the tubes sticking out of my neck, and my blood was circulated through the machine which extracted the stem cells, then returned the remaining cells to my body. There was only one cup of blood outside my body at one time as I sat there for 2-3 hours as my blood wooshed through the machine and through my body. The machine made a curious sound as it worked away, similar to tap-dancing; what I liked to call the 'Stem Cell Song'. 

While that one collection would've given them the stem cells they needed, they brought me in again Friday morning for another go on the machine just to err on the side of caution. This time around we met a nice man called Aaron, who seemed to know a hell of a lot about stem cells. Aaron took some blood from me and predicted it would show a drop in my stem cell count, but again I caused quite a stir when my CD34 counts came back as 750. Now, that was the highest they'd seen! I don’t know what these high counts mean – I suppose it just indicates that my despite what my body has been through, my bone marrow is very healthy (or that I’m a superhero, as a friend suggested. Personally I like the latter theory better). I took a peek at the bag of stem cells before I returned to the ward, which resembled a Tequila Sunrise, the way they went from red at the bottom to a murky yellow at the top (where the white blood cells and plasma were). Mmm … Stem Cell Sunrise! When the official stem cell counts came back, it turned out they had harvested 67 million – which they figured must be close to a record! (They only need a minimum of 2 millon to go ahead with the transplant). I am a stem cell making machine!

My precious stem cells ... straight to the freezer you go!

Then the good news just kept coming. The doctor gave me the green flag to be discharged on Thursday afternoon. My white blood cells had leaped from 6.7 to 40 overnight; there was some kind of out-of-hand malaky going on in my bone marrow (maybe it was celebrating - hey, the stem cells are out! Let's throw a party!). That night I couldn’t wait to get out into the open air, free of all drips and hospital beds and blood tests and doctor visits, so my mum, sister and I treated ourselves to a delicious Thai feast on Smith Street.
It's amazing how quickly I bounce back, once I'm on the up again. For the next few days I was out and about in Melbourne, feeling very mobile and strong. My mother was stunned at my transformation; I was 100 times better than the Beth that had arrived in Melbourne several days ago. 

Saturday, we drove home and I spent a really nice weekend catching up with my little sister and old friends. Being in a small town, I found myself in the same restaurant two nights in a row; both times served by the same young chatty waiter. However, thanks to some crafty wig-wearing, the first night I'd been a brunette, and the second a blonde. The jury's still out on whether he actually worked out whether I was the same person or not.

By the time Valentine's Day came around, a day I for the most part refuse to acknowledge let alone mark in any way, I was pleasantly surprised by the arrival of a bouquet of white lilies delivered to my front door. As soon as I opened the card and read Matt's name I wanted to cry. Flowers, all the way from the UK. It's amazing how special gestures like this can make you feel. Maybe Valentine's Day isn't so bad after all ... 

On Wednesday, like a yo-yo, I was Melbourne-bound again.  Mum and I had to be up at the crack of dawn if we were to make it to Peter Mac at 8.20am to get my bloods done. Inevitably, we got stuck in traffic and got to the hospital at a time more like 9, and then we had to wait in an excruciatingly long queue before my number was called. Peak hour on all counts.
Then I was off to get my PICC line - a long central catheter inserted into my upper arm, then advanced through to a bigger vein above my heart. The line meant that the nurses would be able to draw blood from it and attach my drip to it without the laborious trials of needle jabbing and lamenting over my woeful veins. It was going to make my life and theirs a lot easier (the charge nurse actually said she would throw herself off the 9th floor if I didn’t get one – my rebellious veins had become notorious about the ward). Unfortunately, due to several delays, my 9.30am PICC line appointment became a 1.30pm appointment. 
The delays on the PICC line meant I did not have time to get the first instalment of my chemo, the drug Rituximab, because there simply wasn't time. This was very disappointing because it would extend my stay in hospital by a day. But as this whole journey has taught me, things often don't run to plan, and when they veer off course you can't fall apart because in the scheme of things, it's trivial. I've had to miss out on a lot of things recently (giving away tickets to a band I really, really wanted to see a couple of weeks ago because I was feeling so ill broke my heart). But really, what is a missed social event when you’re fighting for your life?

Thursday I was admitted to Peter Mac for my second round of Hyper CVAD (fifth cycle altogether). I was pleasantly surprised to receive a bed with a view. Long windows gaped out to the gorgeous St Patrick’s Cathedral, its dark steeples piercing a brilliant blue sky. But view or no view, these hospital stays were starting to wear a bit thin. Visitors helped, as did my laptop and Nintendo DS, and the odd meander to Fitzroy Gardens (complete with drip machine in tow, attracting all kinds of stares), but the routine was getting old. I know I have to adjust, because hospital time is going to be a part of my life for some time yet, but it doesn't make it any easier. I still hate the dreariness, the long days, the warm sun mocking me from the window, being stuck to a drip and the horrible hospital food that I don’t want to touch. 

The view could be a lot worse ...

This time around was also difficult because on my third day in hospital the nurse came around and told me I had tested positive for a bug called VRE - an antibiotic-resistant bug that lives in your digestive tract and generally doesn’t cause any problems, but if you test positive for it in a hospital, you may as well have the plague. From then on, nurses, doctors, visitors and even the food staff had to wear a gown and gloves every time they came near me. They also moved to my own room, in isolation so I wouldn’t infect anyone. I felt alienated. The only benefit was that I got my own room and some semi-decent sleep. But otherwise, I felt like a leper.
On Sunday morning, based on the results from my blood tests I could be discharged, but because I had to get the Rituximab as an outpatient on Monday morning, I had to stick around. I was disconnected from the drip and was able to go out for the day, but would return that night to sleep at the hospital, then get discharged the next morning. I was keen to get as far away from the place as possible, though I wasn't feeling great ... I was off my food and feeling weak. 
My mum, sister, cousin and I did a trip to Essendon but after sitting outside at a cafe in the heat, I realized I didn’t feel too well, and had to run myself to the toilet to throw up. It wasn't one of my best days. I got back to my dark hospital room that night, feeling really ill and lying on the bed in discomfort, thinking I’d never sleep. The one good bit of news I got on my return was that I didn’t have VRE at all – there had been a mix-up at the lab. Leper stigma lifted! The staff were apologetic for the mistake, but I got two nights in my own room out of it so ... swings and roundabouts.
Strange dreams and mental images dominated my sleep that night; something else I seem to get around day 4/5 of my chemotherapy. When I woke up in that cold, dark room early Monday morning, I couldn't shower and get out of there quick enough. Then it was up to the chemo day unit to get my belated Rituximab, and then finally, home. At times, living at my mum and dad’s property in the bush has felt isolating, especially having come from the hustle and bustle of London, but this time, it was a safe, leafy haven that I was so happy to see. I have also developed an unhealthy attachment to my bed - I don't think I have ever held such affection for a piece of furniture before - too many years of sleeping on rickety hand-me-down beds in share houses. Just to be out of hospital had instantly lifted my spirits ... being admitted to hospital is almost worth it for the pure elation you feel when you're let out. Almost.
Amazingly, the last few days I have been in great shape. I have been going for walks, eating and drinking plenty and apart from some mild fatigue and shortness of breath – a symptom of my slightly low red blood cells - I feel pretty good, which is in stark contrast to my previous cycle. I've now realised that some of the horrible symptoms I experienced then were most likely a result of my intrathecal – a procedure in which chemotherapy is injected into my spine, which is then carried through my spinal fluid to protect my brain. I have a feeling it had been a bad dose during my last cycle, because I'd never had these symptoms before.

Pancakes on Pancake Tuesday make everything all right.

But nothing's ever simple. While I am so happy to be feeling good right now, it's underpinned by a niggling anxiety that maybe the mild symptoms mean the chemo isn't working ... however, it's not worth thinking about until I get my third PET scan in a couple of weeks.
Things are moving along, and the steps are being taken. It feels so good to tick stem cell collection and  my fourth round of chemo off the list. Every round of chemo means one less to go, that's what I keep telling myself. And while my eyes are always on the bigger picture, I also have to be careful not to look too far ahead either - worrying about a scan that is weeks away is in no way healthy. One day at a time.

Saturday, February 4, 2012

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.