Wednesday, October 31, 2012

Sister stem cell superpower!

Tuesday, October 30 was stem cell collection and donation day, also known as "day zero" and what a beautiful, sunny day it was. The sun was shining, the birds were chirping, Melbourne was hustling and heaving under a deep blue sky … 

Beautiful day for a stem cell transplant (view from my window)
Megan came into the Royal Melbourne to begin collection fresh and early at 9am. For about 5-6 days prior to collection, Megan had been given twice-daily injections of a drug called GSCF to boost her stem cell production. This was more an inconvenience for her than anything, but GCSF can also cause symptoms like bone pain, which luckily Megan didn’t experience much of. Since my counts were still good on stem cell day, I was able to trundle down with my "pole" from the BMT ward to apheresis where Megan was hooked up to the machine (much similar to the machine I was hooked up to for my autograft, but smaller and more 70s looking) and chat to her while those stem cells were filed away. Megan’s blood was being divided into three bags, one of plasma, one of the “dregs” and one of the precious stem cells, which resembled a burgundy-coloured liquid in the bag.

Phase 1: harvesting ...
Megan had to remain attached to this machine for a good three to four hours to ensure they got a decent collection. At about 1.30, they were done, and a cell count was conducted. They had collected about 10 million stem cells from Megan; they would be giving me 8 million (more than enough) and freezing 2 million for a rainy day.  (She didn’t manage to smash my record of 63 million over two collections earlier this year, but I won’t rain on her parade. She did a good job!).

The process of the allo stem cell transplant is rather anticlimactic. It’s nowhere near as involved or complicated as getting an organ transplant. As my nurse Andy quipped, “It’s just like a blood transfusion, only crunchy”. The nurses had all warned me it was boring, “even more boring than an auto transplant”. When I had my auto SCT in April, it was all very futuristic looking with the cryogenically preserved cells arriving in a frozen cylinder and being dipped into a “mini pool” for defrosting. But this time, for the allograft, the cells were delivered “fresh”. They were slung up onto the pole and as they like to infuse them quickly, they vanished rather fast. Nonetheless, there was a captive audience (mum, Jacqui, Megan, Tim and about 2-3 nurses) to witness their delivery, and while it wasn’t a cataclysmic, Captain Planet-esque combination of sister superpowers like some might’ve hoped, it was a jovial occasion.
Megan's stem cells, transported to my room via a state-of-the-art cooler bag
Before they gave me the cells, they had to give me some pre-meds, one of which was Phonergan, used to treat allergic reactions. Phonergan has a habit of making me very drowsy, and as expected, this dose went straight to my head, when I instantly started slurring my words and letting slip some “Bethisms” (that were then published on Twitter, thanks Tim and Jacq). At least it added a little excitement to what was a seemingly mundane process.

But despite outward appearances, it was a momentous occasion. I now have a little bit of Megan inside me, a gift that hopefully marks a new lease of life. Now I just have to wait for a week while her stem cells grow and develop, and produce vital white blood cells which we will hope will fight the cancer, and finish the job that my immune system, and the chemo, couldn’t manage to do. I will have a new immune system, a new blood type (from B+ to AB+) and maybe even a cure for my hayfever if I’m lucky. (Just kidding, I don’t really care about the hayfever part, though that would be nice.)

In the lead-up to and following the transplant, I have been on a constant infusion of anti-rejection drugs to ensure my body doesn’t reject her stem cells, and I will stay on this medication until they eventually wean me off it, hopefully around that magical day 100.

I am now on day +1 of my transplant and for now, it is just another waiting game.  Waiting for my blood counts to drop, and Megan’s stem cells to kick in. I am unable to leave the bone marrow unit, but they encourage me to walk around, so all I can really do is little pathetic laps of a very small space, wheeling my “pole” along with me. If anything, I now have some idea of what it must feel like to be Julian Assange.
If all goes well, I will be out of here in 3 weeks, give or take. I am bored already, but the less eventful the coming weeks are, the better, really. I know I still have a long way to go, but every day is one day closer to getting out of that door. 

Me and Hippo Jo, in this together

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 31st 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. 

Saturday, October 13, 2012

Allo, stem cell transplant #2 … I’m ready!

From diagnosis to now: what a journey, huh?

So, 10 days until my allogeneic stem cell transplant, and I am as ready as I’ll ever be.

Last week I had an appointment with my oncologist. He was beaming when he called me into his office, ecstatic about my PET results. "For a while there I wasn't sure if I would make it to the transplant," I said, and he replied, "That was a very real concern." The appointment was to discuss these PET results and the next step forward, which was the allogeneic stem cell transplant. This part of my journey would be handled by a team at the Royal Melbourne Hospital, so this would be my last appointment with my oncologist at Peter Mac, hopefully for a very long time, or forever, if the transplant goes well. Part of me was sad about this; as much as I have resented the trips to and fro from Melbourne, the lengthy hospital stays, the constant blood tests, follow-ups, phone calls, Peter Mac has become like a second home and the people in it like an extension of my family. It actually makes me tear up when I think about how, as horrible as my journey has been, there have still been many joyful moments amongst it all, thanks to the support of the staff and the people around me. Having spent time in many other hospitals, overseas and in Australia, I have to say that Peter Mac is really the only place where I haven’t felt like a number. With many of the staff I felt like I was their only patient, to the point that I felt surprise, and a touch of jealousy, when I saw them with other patients. The staff there just have this magical way of making you feel like that. 

I have spent most of this week at what will be my new second home, the Royal Melbourne Hospital. I was quite overwhelmed by how much bigger the place is compared to Peter Mac, to the point that you can feel a little bit small. But the staff are all lovely and I'm sure in no time I will develop a similar fondness for the staff at this hospital. I am still trying to navigate my way around its convoluted maze of corridors, but the place that I will be tied to for the next four months is the fifth floor, which houses the Bone Marrow Transplant and Haematology units. 

My week has been filled with a barrage of pre-transplant tests, to check that my organs are all in working order in the lead-up to the transplant. Over two days, I had a bone density scan, bone marrow biopsy, dental scan and exam, a million blood tests, respiratory tests and also met with a number of people such as social workers, dieticians etc. On the Friday (yesterday), I had a PET scan. Everything came back satisfactory as far as the transplant is concerned, so it will be going ahead on October 22 as planned.

So to give you some idea of exactly what I am in for from this date, here is the rundown:
I will be admitted to hospital on October 22. However, for the first five or six days of treatment, I will not be in the hospital, I will be receiving chemotherapy via 'Hospital in the Home' ('home' being a charity-run apartment 5 minutes from the hospital). On about Day 6 I will receive a more toxic chemotherapy and from then on the Bone Marrow Transplant Unit will be my home for the next three weeks, give or take. 

At the same time this is happening, my sister Megan will be getting daily injections of a drug called GCSF, which will stimulate blood cell production. As a result of this drug, Megan's body will produce an abundance of stem cells, which will spill into her bloodstream. On October 30, they will collect the stem cells from her bloodstream by hooking her up to a giant machine, much like the one I was introduced to at Peter Mac way back when I underwent my autologous stem cell transplant in April. It's pretty cool that Megan is doing this for me, but really, she gets the easy part. And I challenge her to match my 63 million stem cell count I managed earlier this year (though Royal Melbourne’s Bone Marrow Transplant co-ordinator did tell me about someone who managed a collection of 140 million stem cells, which made me feel less special).  

By giving me Megan's stem cells, they are effectively giving me a new immune system. My immune system was unable to get rid of the the cancer, so they are hoping that Megan's just might be able to do the trick and eliminate those tiny little cancer cells that are left. These stem cells are given to me via a drip, much like a blood transfusion. They will be given to me "fresh", that is they will be taken from Megan and given directly to me, they won't be frozen, stored or any of that jazz. 

When they give me Megan's stem cells, my immune system will be suppressed. Otherwise my immune system will start fighting hers, and won’t allow it to take over. Which is where the chemotherapy comes in - this will keep my immune system quiet so that Megan’s immune system comes in fighting, and effectively take over from mine.

After I am given the stem cells, I will spend three weeks in hospital, and that period probably won't be that much different to to the two and a half weeks I spent at Peter Mac for my autograft. The risks of something happening down the track, however, are much more pertinent. For three months I will have to visit the Royal Melbourne three times a week so they can closely monitor me and look out for two main things: graft vs host disease, and infections. 

Graft vs host disease occurs when Megan's immune system (the graft) recognizes the cells in my body (the host) as "foreign" and attacks them. This is exactly what we want to happen with the lymphoma; but GVHD can affect the skin, liver and gastrointestinal tract, causing things like a bad rash, diarrhea, vomiting, etc. Results in the past have shown that having a little bit of GVHD is favourable as usually this also means that the graft is attacking the cancer too, but GVHD can be very severe, to the point that it can cause life-threatening complications. If the GVHD is getting out of hand, I will be treated with steroids (Prednisolone, a drug I know well) which will suppress my immune system and stop it from attacking Megan's. The downside of this, however, is that it leaves me vulnerable to infections and it may also reduce the graft-versus-tumour effect. So you can see how a lot can go wrong here, and there is a fine balance that requires close monitoring and medical expertise. 

The next milestone that I will be working hard to get to is 100 days post-transplant. If I can get there with a) no cancer and b) no major complications from the BMT, my contact with the hospital can be reduced to three-monthly scans. It will be a monumental day, and I will get there. 

So am I scared? I am. But I am more scared of the transplant failing to cure me than of what it is going to do to me. I don't expect it to be a walk in the park, but I am ready for it. I am tired, both physically and psychologically, but I know I can take anything this cancer throws at me now. It's been a long year. I have had 8.5 rounds of chemotherapy, one round of high-dose chemotherapy, an autologous stem cell transplant and now I am heading into an allogeneic stem cell transplant, all within 12 months.

But right now I am so, so thankful that I have a date for my transplant and that is happening quickly. Yesterday I got a call from one of my doctors about my PET results. Now remember that the last PET scan I had was two weeks prior and it had come back clear. Well already, yesterday’s scan showed that the cancer is growing again in the chest area and possibly in the pelvis as well. They are small spots, but they are there. After two weeks. Sometimes I am just blown away by how aggressive this cancer is, and how powerless I am to stop it. But I feel so blessed that there was a cancellation in late October, that allowed me to get a transplant this soon. I just hope and pray that it doesn’t leave any cancer cell unturned, so to speak.

I would be lying if I said I still don't worry about the cancer coming back. Relapsing after the allograft is still a pretty big risk, but without the allograft, the risk of relapse is 100% (well, as shown on the scan, I have effectively already relapsed). As long as there is still even the slimmest chance of a cure, I have to keep fighting.
Love this quote - thanks Glenn

The timing of the allograft means I won’t be able to be involved with the Peter Mac bike ride, which I had signed up for as a crew member. It also means that Megan, as my donor, also won’t be able to partake as a rider. This is really disappointing - I just think it would have been so moving to see all those riders, including members of my family, putting themselves out there to raise money for a cause so close to my heart. But then I think of the cancer cells already dividing and multiplying inside of me … and that’s irony, right? That the one reason my family is taking part in this ride is also the reason I can’t take part.

Anyway, to conclude: today I was sitting on the tram and as it tends to do on long public transport jaunts, my mind got thinking: to how wonderful the last few months has been. I have enjoyed trips away, weekends with friends, laughs, catch-ups with old friends that are just so wonderful in such a unique, warm way because it’s like no time has passed. I want to thank everybody that I have spent time with over the last six to eight months, everyone who has sent me messages, taken the time to meet up with me, put a smile on my face and served as a wonderful distraction and a reminder of how lucky I am to be surrounded by such awesome people. You all know you are. And an extra special thank you to those who have organised and supported recent fundraisers for Peter Mac, it means so much. Despite all the difficulties I have had this year, there have also been plenty of uplifting and genuinely funny moments, and they are the things that keep me sane. 

Wednesday, October 3, 2012

Pedalling a good cause

Last time I wrote, I had good news. I’d had one round of chemotherapy, and the CT scan that followed had shown that despite the slim odds of this chemotherapy succeeding, the lymphoma had shrunk. I never saw the scans, so I really didn’t know just how significant the response had been. But the doctors were happy, so I was happy too. And this was the first good thing that had happened to me for a while, so I revelled in it.

So I went into round 2 of the chemo and once again handled it pretty well – I battled some fatigue and low blood counts, but overall I held up OK. After round 2, I got another PET scan, my seventh so far (I have had so much radioactive tracer injected into me I am surprised I am not glowing right now). I think it is pretty obvious to anyone who has been following my blog how much I hate PET scans, not just because I usually have to get up early and fast for them, which makes me hungry and grumpy, but also because they often bring anxiety, and sometimes heartbreak, too.

I had my PET on a Wednesday. On Friday, I still didn’t know the result. On this day, I was sitting in pathology at Peter Mac, waiting to get a blood test as part of my weekly routine, and I bumped into the lymphoma nurse. “Did you get your PET scan results?” she asked me. “No, I haven’t heard anything, yet,” I replied. “Well, aren’t I glad I bumped into you then,” she said. “You had a complete response.”

It took me a minute to process this. In medical terms, a “complete response” when talking about a PET means there is no cancer showing on the scan. I wasn’t expecting this at all. I was hoping it would have shrunk, but I wasn’t expecting the scan to come back completely clear.

Now, of course this does not mean I have no cancer in my body. As I later discussed with the head of the transplant team the following week, there is “no doubt” (his words) that there are still microscopic cancer cells floating around my body. They are just not big enough for the scanner to pick up. But this is the best result I could’ve hoped for. And to be honest with you, a few months ago, I had serious doubts about whether I would ever have a clear PET scan again. I think my doctors had serious doubts too, if the truth be known. After discussing the result, one of the doctors from the transplant team came to me and shook my hand and said, “I am very, very happy to see you again.”

After my negative PET scan, I managed to fit in a long weekend to the Grampians, where I spent time at my cousin’s amazing house at Hall’s Gap. A wonderful weekend with wonderful people - and the steep walks were all worth it!
So now, it is hoped that the allo-stem cell transplant will eliminate those microscopic cells, those cells that the chemotherapy just can’t seem to eradicate. I have finally reached the final frontier, my only and last chance at a cure. For a while the allograft just kept slipping so far away that it started becoming some kind of elusive dream, I felt like I was never going to get there. But I am there now, and suddenly I am a bit nervous. I’ve been through a stem cell transplant before, but this one is far riskier and far scarier, and I really don’t want to go through it all again. But I have to.

There are still no guarantees that the allograft will work. In fact, according to medical research, the chances of it not working are greater than the chances of it working. But right now I refuse to even think about that possible outcome, I just can’t. I know how dangerous it is to get ahead of yourself in this game. I have to always bring myself back to now – I will cross bridges once I get to them. Right now, hope is keeping me going, and even if it ends in disappointment, it is better than having no hope.

Today I got a phone call from the transplant team. A bed has become available for me in the third week of October, the exact date to be confirmed. It is important for me to go quickly into this phase of treatment in case the lymphoma decides to go crazy again, like it did back in June/July. So I have three weeks 'till I face this big, hopefully final, fight.

Of course it shouldn’t matter in the scheme of things, but of course it still really does bother me that this means I won’t be going to Harvest Festival to see my favourite band, that I will miss the Coldplay concert I intended to attend with my sister (yes, I know it is totally uncool to like Coldplay but I don’t care what you think), that I will miss Spring Racing Carnival and a whole bunch of other stuff. But once again I have to look at the bigger picture. On November 11, it will be a year since my diagnosis and I will most likely be in hospital – how fitting that things should come full circle like that. But a year ago I was just beginning my journey, and hopefully this time around I will be finishing it. It’s so hard to believe that this cancer fight has taken up almost a whole year of my life. I can’t even remember what ‘normality’ was, and going back to it seems a long, long way away.

But as well as my stem cell transplant, there will be another big, massive event in October which will no doubt also be a challenge for those involved: the Peter Mac Ride to Conquer Cancer.

This is obviously an event close to my heart – Peter Mac is like my second home. The doctors, nurses, support staff, everybody in that place has been so amazing and made my journey that little bit easier. I feel so lucky to live in a country where these facilities are available. Peter Mac also carries out important research – just recently they had a world-first breakthrough in the fight against leukaemia and lymphoma. What I also like about supporting Peter Mac is that the money goes towards all cancers – not just one specific kind. It breaks my heart that people diagnosed with rarer diseases such as brain cancer and pancreatic cancer face a 5% chance of survival due to lack of funds and research. Once the funding is allocated, it can make such a difference: for example, 15 years ago, leukaemia killed 90% of patients, now that figure has turned on its head with a survival rate of 90%.

My sisters, brother, dad, cousins and my uncle have bravely taken on this monumental task of riding 200 kilometres in two days to raise money for this cause. If they don’t raise their fundraising targets this month, they won’t ride.

Here is the link to my family’s team – called the ‘Flying Dorts’. Listed in the members you will see my sisters Jacqui and Megan, my brother Sam, my uncle Mick and my cousin Kate. You can donate online, and it doesn’t matter how much, every bit counts.

There are also several events to attend: my cousin has organised a Grease movie night fundraising event in St Kilda, all proceeds going to Peter Mac:

For Gippslanders, my sis has also organized a high tea fundraiser in Traralgon:

My brother is also playing a fundraising gig at the Basement Bar in Bendigo on October 16. 

So October brings its share of tough challenges, and like those cyclists who will take to the roads of the Yarra Valley and ride a ridiculous distance, I can’t wait to get to the other side and say, ‘I made it.'