Saturday, April 21, 2012

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.

Monday, April 16, 2012

So it's back to business ...

So I’m back at Peter Mac, and in some ways, it’s like I never left. The scent of the antiseptic hand soap smacks of familiarity, the food is just as dismally unappetising as ever and as if things have gone full circle, I have ended up in the bed (good old 10C, my old friend) in which I began my Peter Mac journey. But while some things don’t seem to change around here, things are still definitely different this time around.
This time I’ve come fresh off a month-long breather. And what have I done with my four weeks off? Oh, not much really … just three awesome road trips (one interstate), a music festival, a wedding, several reunions with old, amazing friends, making new friends, some bad TV - Geordie Shore (don’t judge me), a three-night hotel stay in my own city and a lot of laughing, dancing and much more.
The holiday was slowly savoured from start to finish, like a big meal after a period of fasting. The first bite was a Golden Plains for the ages (see last post) and last but not least, the treat at the end was the equally epic event of Tim and Ange’s wedding (I could say wedding of the year, but that would be unfair on the other two I have attended this year). Packed between these two cataclysmic events, were three road trips: Bendigo, Merimbula and Mornington Peninsula; some visits to some old Melbourne haunts, reunions with many old friends (uni and high school), and a three-night stay in a hotel stay at Albert Park, which was filled with more tuba players than you could poke a conductor’s wand at (every brass player in Australia seemed to be at that hotel – band convention?).
The highlights: Bendigo to visit Sam, which was lots of fun; even the part where Jacqui and I got hit with a tirade of verbal abuse from a carful of ‘bush pigs’ who alluded in less than subtle terms to our presumed preference for the same sex (not true, by the way, boys). We drove loops around Bendigo, raiding the town’s gold mine of vintage and op shops, enjoyed ambient beer gardens at historic hotels, made people watching an Olympic sport at the only bar we could get let into and just enjoying the old-style change of scenery and good company.

Bendigo beer gardens

After Bendigo, I had to go to Peter Mac to get some tests done (pre-transplant  checks including kidney function, dental health, bloods) and get briefed in some more detail by my nursing co-ordinator Trish on what the stem cell transplant would entail. One of the tests required a 24-hour urine collection, which unfortunately meant on my final day in Bendigo, I had to collect all my pee into  the one bottle. This bottle had to come with me to Melbourne, and as I was carrying it as stealthily as I could to the car, Jacqui eyed off my plastic bag and asked, “Is that juice?” Her query was met with disbelief as I had just warned her the day before that my bodily fluids would be accompanying us on the trip home. Luckily the bottle stayed firmly between my feet and there were no embarrassing mishaps. But it was rather funny really.
Coming back to Merimbula was like reuniting with a former lover, minus the awkwardness. And so luckily for us, this reunion was full of sunshine and good times. My sister, her friend Ash and I hit the road, stopping at Lakes Entrance on the way for some fish and chips and unexpected seal spotting. We spent the weekend at the leafy retreat of my aunt and uncle’s Nethercote property, enjoying nibblies on their veranda, guitar sing-alongs, fresh air, games, wonderful home-cooked meals (Caz and Brian can cook!) and jokes. We shopped at Candelo market, buying all sorts of nick nacks and treasures including some ‘so bad that they’re good’ records (including Mrs Mills Non-Stop Honky-Tonk Party –straight to the pool room).
$1.50 - bargain
In Merimbula town, I spent two nights with some of my favourite people, Jasmine and Kelvin and their four gorgeous children who filled my days with laughter. Their children were so full of energy but in such a great way. I am going to sound clucky as hell by saying this, but children are such special people and we can learn so much from them. It was also wonderful to see their little girl Pearl doing so unbelievably well after her own battle with leukemia. Life after cancer isn’t easy either; outsiders tend to overlook the monthly ritual of check-ups, the niggling anxiety that the cancer will return, the inability to use the word ‘cured’, because being cured and being in remission are two different things. But Pearl and her family are doing so well; I hope they all realise how inspiring they all are to me, and how much I enjoyed spending time with them again.
I also got to visit some of my favourite beaches (I may be biased, but to me they are some of the most beautiful beaches in Australia, and the world, particularly because of their ‘untouched’ nature) and even had a couple of swims. The gods were smiling.
I also went to visit my former boss, Liz, who I found out had been trying to contact me by phone since she had heard the news. I surprised her at the office, and when she saw me, her face was filled with enough joy to bring tears to the eyes. She stood up, gave me a hug, and held my hands for a long time. Liz was like a mother to me during my years living in Merimbula, and I knew it meant a lot to her to see me, and to see me doing so well.
Stopover at Lakes on the way home
Another special thing about this time off and well, the time since I have arrived back in Australia, is the reunions I have had with old friends – from university and high school. Highlights include sitting on the veranda with Suzanne and her daughter Lavinia, sipping vegetable soup while watching the rain fall over her Yinnar property (once again opening my eyes to the beauty of my own local area), J-Plo, Fleur and I reverting to our former uni selves terrorising Melbourne, sharing endless laughs with old high school friend Andrew, lunch with Nicole which stretched on for hours because we did more talking than ordering, and all the others I have bumped into along the way – people I have had little to do with over the last 8-10 years, but have wished me all the best. The kindness of all these people I know, after all these years, is truly touching. I hope that I can do the same for others one day, because I now know how special these seemingly small tokens of kindness can be.

On Easter Saturday a group of us did a day trip to Tyabb, where we indulged in some more vintage and op-shopping, a stroll along the beach (where a friend almost got caught in quicksand - quite dramatic), a half-arsed bush walk, oysters and wine at Arthurs Seat overlooking the twinkling lights Peninsula. A drive back through Mornington, then pizza at the hotel in Melbourne. Another fantastic day.

Luckily just before going back into hospital I got to attend Tim and Ange’s wedding, which was so much fun I think I was piling into a cab at 4am. I think the best thing is that Ange and Tim are such wonderful people who are nuts about each other. So glad I got to spend this special day with them. I still have sparkles in my wig from the reception … part of me doesn’t want to brush them out. :)
Another awesome wedding ...
Finally I got that little taste, that wonderful window of what my life used to be. I had strength, freedom, no responsibility and an amazing country to explore and amazing people to visit.
For a while there I was enjoying myself so much that I didn’t want my break to end. With my strength returning in full force, and along with it my hair, eyelashes and eyebrows, it was hard to even believe that another hospital stay loomed ominously in the not too distant future, and “the big one” – the stem cell transplant. I didn’t want to think about it, and I didn’t. I totally lived in the now and loved every minute of it. But as admission day grew closer, I began to grow anxious in a different way: anxious to get it over and done with. I’m as physically and psychologically ready for this as I will ever be. Bring it on; let me hit the final and most excruciating lap of my journey, to collapse at the end, giddy and woozy with victory.

I think the last four weeks will be etched in my memory. When you have cancer, every emotion is amplified; time seems to go slowly; the highs are memorably high. You don’t take anything for granted anymore. Even a simple pleasure such as sitting out in the sunshine and enjoying a meal with some friends is seen as a privilege, not a given, because there were so many times you were too sick to do so. You learn to value things so much more, and I think this quality will be with me for life. I heard footballer Jimmy Stynes (R.I.P) in his documentary talk about how having cancer made you realise what the important things in life were, which to him, was his family. As a result, Jimmy grew closer than he could have imagined to his wife and children, and he was able to showed them exactly how much he loved them. I am a strong believer that everything happens for a reason, and even though I am deeply saddened that we lost someone like Jimmy, I have no doubt he was able to fill those two-and-a-half years from his diagnosis to his death with so much love, a quantity that many would not realise in a much longer life.

Having been in hospital a week now, I am starting to feel the weight of what I am about to face. But I have to put my head down, get this done, and get to my final goal: a cure. Bring on the victory lap.