100 days ... but who's counting?

One-hundred days ago, I was sitting in isolation in the Bone Marrow Transplant ward of the Royal Melbourne Hospital, anxious but full of anticipation about the journey ahead. My white cell blood count was written clearly on the whiteboard: zero; meaning that my bone marrow was primed for the its new stem cells to arrive. The infusion was quick and simple and uneventful, but the procedure was potentially life-saving. Sitting there on day zero, I felt the weight of the monumental task ahead. At that stage, Day +100 felt like an elusive dream.

Well I've made it. I'm officially at Day +100, that magic day. But it's not the happy milestone I expected: it's just another day. 

Day +100 has been mentioned a lot in this blog, and some of you might wonder what is so special about it. Day +100 is what every bone marrow transplant patient is striving for, because, ideally, on this day, they are set free from the hospital regimen of weekly blood tests, check-ups and scans. It means they have got through the 'danger period' and on their way to recovery and independence. It is the day they walk out of the hospital and get on with their lives.

Today I didn't get to do that. While essentially, I was able to walk free of one hospital, I am walking right into another, and my treatment is ongoing. 

I don't really care to dwell on it; Day +100 as a milestone is uneventfully over, but this just means I get to create another. I know better than any other person that things often don't go to plan. I have often likened my journey to sitting on a raft being pushed down a river, and I simply have to go where the river takes me. If I hit rapids, there is no sense in fighting, I simply have to ride it out and have faith that I am going to get out the other side. This visual metaphor has been a very calming influence for me.

So in the past three weeks or so in which I haven't wrote, many things have happened. 

1. Slight changes to the game plan, again

Last time I wrote, the plan was to get 25 sessions of radiotherapy to shrink the tumour in my chest to a manageable size, so that the graft (my new immune system) can carry on and do its work fighting the lymphoma. This plan still stands, however, some extra ammunition has been added to the mix in a bid to hit the lymphoma with everything we've got. 

Firstly, I'll be getting a drug called Rituximab, a drug I know very well. It has featured in every single cycle of chemotherapy I have had in the last 15 months (which adds up to more than 10 cycles now). Rituximab, which was introduced in the '90s, destroys B cells, so it is very effective in treating my cancer (diffuse large B-cell lymphoma). Alongside radiotherapy, it is hoped this drug will have a dramatic effect. The side effects of Rituximab are minimal compared to other chemo drugs, so I don't need to worry about the usual symptoms like low blood counts, loss of hair, sickness, etc.

The other drug on the table is Interferon. This will be used to boost my new immune system, to kick it into action and get it fighting the lymphoma. At this stage, the plan is that I will receive both of these drugs in two weeks, following the completion of my radiotherapy. 

2. Tell me why I don't like Tuesdays

I have been admitted to hospital twice in the last two weeks or so. The first time was Tuesday, January 22, when I came into Peter Mac for my Rituximab. I was feeling pretty average that morning, but this is not entirely unusual (I'm not a morning person at the best of times). When they did my observations, it was discovered I had a low-grade fever (37.5), an elevated heart rate (140bpm) and low blood pressure. Blood tests also showed my white blood cells were at rock bottom (0.1). Bang - hospital admission. I stayed for two nights, no evidence of an infection was found, and I was discharged just in time for the weekend.

3. Aussie Day shenaningans

I had friends visiting, so after my "release" we made a weekend of it. This involved dinner in a restaurant over the twinkling lights of Melbourne, singing our lungs out to karaoke till all hours, nibbles and games at the park and some Hottest 100 tunes (the worst countdown in the history of Hottest 100 countdowns), energetic Just Dance-athons and a cheeky road trip to Mornington on a perfect blue-sky day. With the beauty of hindsight, I now acknowledge that it was probably overload but I would do it all again in a second. 

If you haven't sang karaoke for five hours straight to an empty bar you haven't lived.

Bogan? Me? Nah.

4. Tuesdayitis strikes again ... 

The Monday followed Australia Day I was suffering burnout. I felt ill and could barely peel myself off the couch. Once again this wasn't altogether unusual. For the past couple of weeks since I had been taken off steroids, I had been suffering extreme fatigue, nausea, loss of appetite and an itchy rash, things I assumed were related to steroid withdrawal. I had dropped kilograms from my frame, weight I couldn't really afford to lose.

But the shortness of breath I experienced on Tuesday morning was something else. I had walked from the apartment, into the lift, out of the lift and into the car, and I felt like I could barely breathe. I felt tight in my chest, it felt exactly how I would expect an asthma attack to feel. And I panicked. How can a walk of roughly 10 metres leave me feeling like I was bordering on cardiac arrest? Something wasn't right.

My breathing had steadied by the time I got to Peter Mac for radiotherapy, but when I was called from the waiting room I had a dizzy spell. As I walked to the machine stars filled my vision and I had to steady myself as the radiotherapy assistant asked if I was OK. The nurse was called and after I registered a temperature of 38.1 and an elevated heart rate, I was again admitted to hospital. Unlike my previous stay, this time, I genuinely felt unwell enough to be in hospital so I accepted it.

Four nights later, the verdict was that I was suffering some lung inflammation. Scans and X-rays showed that there was no permanent damage or signs of infection in the lungs, so it was assumed that the inflammation was in its early stages and needed to be treated before it got serious. The doctors believe the cause of the inflammation was GVHD, and the radiation possibly exacerbated it. 

The good news was my chest scans showed that the tumour in my chest had shrunk, by a third of a centimetre, and considering its overall size is just more than two centimetres, this is significant shrinkage considering I'd only had two weeks of treatment. HELL YEAH.

5. Back on the 'roids again

I was discharged on a hefty dose of Predisonolone (steroids), the remedy for lung inflammation. Since then it's like somebody has flicked a switch. Instead of picking at my food with disinterest, I want to eat everything in sight. I have energy, I can walk reasonable distances, my cough has disappeared and I feel like a new woman. This is great, but it always concerns me what a dramatic effect the steroids have on me, and hence the complete burnout I experience when they are taken away. But the important thing is that they are taking care of the lung inflammation and right now I feel better than I have in weeks. As a result I am getting out and about, remaining active and eating as much as possible to make the most of this steroid high. And it's kind of fun!

While I am in a good place right now, the past few weeks haven't been easy. It's been a tumultuous few weeks and sometimes when I'm asked "how I'm holding up" I have to hold back the tears. It's sometimes difficult to accept that after everything I've been through, I still feel like I'm going backwards. I'm tired physically and mentally and so frustrated. I hate that my life is dictated by radiotherapy and clinic appointments. I hate having awesome weekends with friends and family only to return to the crippling reality of hospitals and waiting rooms. I hate seeing all the other patients around me at Peter Mac having such a hard time (though their strength and joy amid the despair is inspiring). I hate that I am a rake, the lightest I've been in about 12 years or more. I hate that I feel I am getting physically weaker, not stronger. I hate cancer so much! 

6. Upwards and onwards

So what's next? I will continue on with the radiotherapy for the next couple of weeks. I have had 14 sessions thus far, so I am just over halfway there. I will rejoice the day I don't have to lie down on that cold bench, get poked and strapped and drawn on, locked into a suffocating mask and get lasered with radiation beams. Although I find myself falling asleep during a lot of sessions, so it's clearly not stressing me out too much. The science of radiotherapy really astounds me, I just can't believe that these radioactive beams are entering my body from all directions and sizzling a tumour embedded deep inside my body. I am always so inspired by how fast cancer treatments are moving - I think in the future radiation will be able to destroy a tumour in no time at all without affecting other delicate organs, chemotherapy will destroy cancer cells without making people sick, and doctors will be able to wire patients' own immune systems to fight the cancer themselves. This is the direction everything is heading.

Around the same time I finish the radiotherapy in two weeks, I will be taken off the steroids again and I will begin on the Rituximab and Interferon which, it is hoped, will help my new immune system to mop up the rest of the lymphoma cells and finish the job. Once again I can only hope and keep all my fingers crossed that this will happen.

At the moment, I have two very promising signs: firstly, that my immune system is interested in fighting the cancer (evidenced by the apparent GVHD and other symptoms) and that radiotherapy or Rituximab or both, are shrinking the tumour. Stuff is working, and I can only be happy about that. 

Oh did I also mention I went to a wedding? Naomi and John, I am so happy I was well enough to share your special day with you - such a perfect day!

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Letter from the inside: day +10

So it’s day +10 and like every drip of saline, the days are slowly trickling by. My neutrophil count has been zero for about eight days now, and unable to leave the ward, I can certainly feel cabin fever coming on. This treatment is testing my patience to every inch of my being. I am hoping that white blood cells, born from Megan’s stem cells, will pop up in my bloodstream soon. But for now it is just another excruciating waiting game. I should just thank my lucky stars that I am feeling pretty good at this stage, but as the nurses say "you are either sick or bored". I'm bored.

For now, I am working towards three goals:

1.     Get out of hospital (hopefully within the next week)

2.     Get a clear PET scan (in about a month and a half)

3.     Get to day +100 with few problems (90 days from now)

So, from a strictly medical point of view, I’m doing pretty well. I started to feel really under the weather at about day +8, when my throat pain increased and I felt weary and drowsy. That night, of the day Obama won his second term of the American presidency, I spiked a temperature. About 90% of patients undergoing my treatment end up with a temperature, so this was no surprise. Additionally a skin infection has flared up on my right cheek, so at the moment I look rather monstrous. I have been on IV antibiotics for this for several days, and it looks like it is being kept under control.

This is much harder than my autograft, simply because things take longer. I was discharged on day +11 of my autograft, and I will no doubt still be here with a zero neutrophil count on day +11 of my allograft. I haven’t even breathed fresh air for coming on two weeks now. There is every chance I could make it to day +20 without my counts increasing, so I have to be patient.

For now I am feeling OK. My throat pain has waned a little bit and they haven’t had to put me on any IV feeding aids, so I’m kicking goals in that department. I can still manage walks around the ward, and still have quite a bit of energy for someone who’s been through the wringer. Got to be positive signs.

As some of you may have noticed, I have resorted to drawing motivational drawings on the whiteboard to keep me going. The box of letters, a gift from my friends from high school, has also helped me remain positive amid the day-to-day gloom. I’ve committed to reading one a day and the photos and cards have put a smile on my face, as well as brightening up an otherwise drab hospital room. Most of all they have helped me maintain a positive outlook – even the notes and cards from people I’ve had little to do with over the past 13 years (showing my age now) – it means a lot that they wanted to drop in a note to wish me well. I still have a few to go – but thanks everybody who contributed, it was such a thoughtful gift.

Another thing that’s given me a bit of a lift is the completion of Jim Stynes’ book, My Journey. Such an amazing and inspirational story; what a man, to face such adversity with such positivity and courage. There is so much I want to quote from this book, but I’ll save that for another time. I recommend this book to anyone, but especially to those who have had experiences with cancer – there will be so much to relate to, and I think it’s a wonderful thing to know you’re not alone. That’s what Jimmy wanted to achieve by going so public with his journey, and I am thankful.

What else? I won $150 by picking a winner (Green Moon) on the Melbourne Cup, which I watched from the comfort of my hospital room. That and Obama’s win, have given me a boost. These are good omens, they just have to be. 

Admission accomplished!

So much to report this week that I think I will have to split this into two posts. But above all, two main, potentially life-saving things have happened:

1. The "Flying Dorts" cycling team completed their 200km Ride to Conquer Cancer with flying colours over the weekend, contributing a whopping $18,000+ towards vital cancer research at Peter Mac (pictured below - this photo is now blu-tacked above my daily cell count whiteboard for inspiration)

2. The stem cells are in! About 8 million stem cells were taken from Megan via apheresis yesterday morning and brought to me in the ward in the afternoon, and administered by drip. Not much really happens for a few days until these stem cells grow and develop new white blood cells and hopefully the "takeover" begins. 

I'll focus on the first point for this post, but to prevent me (and you) from getting lost, I will cover events in chronological order. 

On October 21, I checked into the BMDI (Bone Marrow Donor Institute) apartment that will be my home for the next few months (apart from the 3-4 weeks I spend in hospital). These apartments are run by a charity called the Fight Cancer Foundation, of which Hugh Jackman is actually a patron (there is a wing named after the Jackmans in BMDI house). It's a great apartment and only a short stroll from the Royal Melbourne Hospital, so we've been lucky to secure such a facility.  

My first five days of chemo were administered in this apartment by Hospital in The Home (HITH), which was great because it shortened the time I had to spend in hospital significantly. It was kind of like having your own Mary Poppins who popped in every day with her collapsable pole (to hang the chemo from) and bag of goodies, though there was no 'Spoonful of sugar' song with it, thankfully.  The chemo, Rydarabine, was given as a 30-minute infusion every day and was pretty gentle stuff. I didn't really get any symptoms and remained very active over these 5 days, getting out and about.

Then arrived Saturday, which was a big day. As well as being my hospital admission day, it was the day my cousin Kate, brother Sam, sister Jacqui and dad Keith set off on their massive 200-kilometre challenge, The Peter Mac Ride to Conquer Cancer. The ride began in Albert Park and ended in Healesville on the Saturday, then it was all the way back to Albert Park on the Sunday. Amazing feat and so proud to see all four manage the whole ride without giving up – they should all be proud, as I am. What a team!

The "Flying Dorts" crossing the finish line

That Saturday morning I decided since my family was tackling a brave 200km in two days, then the least thing I could do is drag myself out of bed at 5am to see them off at Albert Park. Typically, it was a freezing Melbourne morning, drizzling and grey with an icy wind blowing. But it was inspiring to see all the cyclists in their yellow vests, and of course as I hugged the four members of my team and wished them luck, it was impossible to hold the tears back. A moving moment, an amazing event that raised $6.2 million for Peter Mac, making it the biggest single fundraising event in Australia. We raised more than $18,000 (and still counting, I think) of that total and that was thanks to the generosity of our friends, family and supporters. Having been through the list of donors on the website, we have been so touched; some of you have been beyond generous. At loss to thank everyone individually at this moment, please do know that every donation has meant so much, and that includes everyone who attended the range of fundraisers we've held over the past weeks. 

Megan and I at her High Tea fundraiser

I’ve also started digging into my wonderful box of letters presented to me by Suze and Mars at the High Tea (which was great, thanks everyone who attended and to Megan and Mum for putting in the hard yards to organise and cook). I have decided I will read one letter a day while in hospital and have been very touched by what I have read so far. In the last few weeks, fundraising for this ride has taken me to a trivia night, a Grease movie night (so much fun singing along, forgot what an awesome classic the film is), Megan’s High Tea in Traralgon and unfortunately I missed my brother’s gig in Bendigo but heard it was a huge success! I’m sure the ‘Moxie band’ will be getting more bookings, my 31^st next year maybe? In the meantime, my story has also appeared in the Latrobe Valley Express, Bendigo Advertiser and The Melbourne Times. Am happy to admit I am a bit of a media tart, just send any enquiries via my agent :)

My wonderful box of letters

News travelled as far as Bendigo ....

It's been an action-packed time. After my last pre-transplant test about 2-3 weeks ago, my PICC line was removed from my arm. It had been my companion for three months. I remember getting it put in back in July was so painful, not physically, but mentally because it signified the start of a very difficult period of further treatment. The time of relapse was a very dark period for me, it floored me, probably even more than the original diagnosis did, and put a big dent in my spirit. Three months later (now) I feel that psychologically I am in a much better place. When I start worrying about the transplant outcome, I tell myself not to worry about something that hasn’t happened yet, but that is easier said than done. I think about it every day, how can I not - it's my life? When my mind wanders to a life in remission – growing my hair back, going back to work, getting my independence back, getting my strength back, I stop myself, as it hurts too much to think that maybe that won’t happen. I have thought about the alternative, death, too, and I know I definitely fear that a lot less than I used to. It's not a nice thing to think about, but it really is something I do have to think about. 

But one positive thing about all this, is that I have tolerated the chemo very well so far which has allowed me to do a lot of things that other cancer patients simply cannot do. Like go to Queensland, for instance. Two nights in Brisbane, two nights in the Sunshine Coast (thanks to my cousin Dan and his lovely girlfriend Stace). 28 degrees, catch-ups with some wonderful friends, swims in the ocean, pool and Jacuzzi (which wasn’t possible with my PICC line nor with the Hickman’s Line I got inserted last Monday – I made the most of this week of line-less freedom!) Amid the drudgery of hospitals and appointments, my life has glimpses of awesomeness, and I am grateful for that.

Gotta love Brisbane ....

So Saturday afternoon I was admitted to the Royal Melbourne Hospital. My room in the Bone Marrow Transplant unit has a view of the city skyline, ensuite, plenty of space for visitors and iPod dock. Penthouse ensuite apparently, a nurse told me. Breakfast included, room service, the culinary delights of Lygon Street only streets away … I have already busied myself making the room more 'homely' with a few decorations and things, since I'll be here for a while. 

Since my admission I've been feeling pretty good; I think I am just glad now that I am here and getting on with it. In the past weeks, out there in the real world, I wasn’t really thinking about it at all, I was just enjoying my freedom, and I’m pretty sure in about a week, the back-in-hospital blues will set in, but for now, it is just on with business. 

On Sunday night, I got a special visit from four members of the "Flying Dorts" cycling and crew team who informed me they have signed me up for next year's ride! 2013, here I come. Apparently there were a few sore bums and tired muscles but they all fared pretty well, and as I've said before, I'm immensely proud. $6.2 million will go a long way, and I am so confident that in the years to come we will be able to eliminate cancer once and for all.