And So It Begins...

It was an interesting sleep I had last night. Everything should have felt familiar - I was in my lovely home, tucked up in our comfortable bed, my wonderful wife was lying beside me, and Jarrah was sound asleep in the other room. Yet there was something noticeably different about last night. Earlier that day, a long strip of white tubing was burrowed under the skin on my chest and then carefully inserted into the jugular vein from my neck towards my heart. A foot long piece of plastic was now left dangling awkwardly from my chest. Not only was it more difficult to find a comfortable sleeping position, but there was something about the night that gave it a greater meaning. For seven and a half years, we had pondered what a bone marrow transplant might feel like, how brutal it might be, and what it may mean for our family. But now here we were, the start of our journey was now very real and clearly visible. No more contemplation, the time had arrived.

The piece of plastic hanging from my chest was a Hickman catheter and it will stay connected to me until well after my transplant is complete. The line extending out of my neck will be used to deliver all my chemotherapy, antibiotics, and other medicines directly into my bloodstream. It will also be used to extract blood samples for testing. The procedure to insert the Hickman lasted only about half an hour and I found it relatively painless. It was certainly more uncomfortable following the procedure once the anesthetics had worn off, but the pain was still very tolerable and sleep came easily after only a couple of paracetamols. I’m sure I will become more accustomed to my new device over the coming week or two. The chemo will no doubt be a different story.

When I returned from hospital after having the Hickman inserted, Jarrah came up to me and asked with concern, “Are you sick Daddy? Have you got an owie?” This morning she came up to me again and asked ‘Are you still sick Daddy? Are you better?” While we were never ignorant enough to think that Jarrah was completely naïve to the situation, her comments reminded us that she is indeed aware that something very different is happening to her dad. As her parents, we know that it’s very important to be mindful of Jarrah’s world beyond our own thoughts and concerns. But it’s still a hard balance to find. We don’t want to hide everything from her - that would be impossible anyway. But there will undoubtedly be events that we will need to protect her from seeing. I wish there was a manual for these times.

My Chemo Regime

Day -7 (Thursday 2nd of March): Fludarabine

Day -6 (Friday 3rd): Fludarabine

Day -5 (Saturday 4th): Fludarabine

Day -4 (Sunday 5th): Fludarabine and admission to Royal Melbourne Hospital

Day -3 (Monday 6th): Fludarabine and Thymoglobulin

Day -2 (Tuesday 7th): Melphalan and Thymoglobulin

Day -1 (Friday 8th): Cyclosporin and Thymoglobulin

Day 0 (Saturday 9th): Transplant Day!

Today, my chemotherapy began. We live close enough to the Royal Melbourne Hospital that I was able to nominate for a program called ‘Hospitals in the Home’. This means that my admission to the transplant ward will be delayed and my first four days of chemotherapy will be administered while I’m sitting on the couch at home. I’ve been told that the first chemo drug to be administered, fludarabine, has relatively few side-effects and is generally well tolerated. My immunity will progressively decrease in the next few days, but I will still maintain enough of my basic defences to be relatively safe outside of a hospital environment. However, I have been warned to stay away from crowded areas and stay inside when I can.

The first dose of fludarabine entered my system only about a couple of hours ago. As expected, I am yet to have any obvious side-effects, although there is an element of hypersensitivity on my part. I only wish that all my chemotherapy could be as well tolerated as fludarabine, but that’s very much wishful thinking. On a broader level, the process feels quite surreal. The best analogy I’ve had described to me is that I’ve boarded a train by myself that is designed to crash. All the medical needs I could hope for will be there to help me when it happens, but the crash itself is mine to experience. I know there’s a world of hurt on its way in the coming weeks, yet it’s near impossible to prepare for.

At my darkest moments, I will be thinking about Nicole and Jarrah and reflecting on our exciting future ahead - why we elected to have a transplant in the first place. I will also consider the many other patients with blood cancers who are ineligible for a bone marrow transplant because of their high-risk profile (e.g. age, prior organ damage, lack of compatible donor, etc). I’ve been given a chance for a cure that many others could only dream about and accordingly, I promise to always respect and value this opportunity.

Note: Please be aware that there will be times ahead where I’ll probably be too sick to write. Even if I can muster the energy, my cognitive function may have been impacted and my writing may lack the clarity that it once did. Yet I promise to keep you updated as best I can.