Caroline is coming home from hospital today, complete with her own supply of oxygen and carrying an extra six kilos in weight because of her enlarged spleen and a build up fluids in her body. Her abdomen is swollen and often tight to the touch, and she said today she no longer has ankles, just stumps.
It’s been a tough few days. Despite the pain from her spleen now being under control, we have had some intense conversations around the type of treatment Caroline now wants to pursue, given that her the blasted blast cells are now up to 40%. Yes. 40%. There had been talk of doing another, high intensity round of Donor Lymphocyte Infusion, using Christian’s cells to try and stimulate any sort of graft versus host reaction. The downside of this was that if it happened, the dose would be quite large and the graft versus host could cause massive, sometimes fatal, and definitely painful side effects. It probably also wouldn’t do much to get rid of the disease because Caroline’s leukemia load is so high. The plus side was that there was miniscule chance it might work, so do you risk it for that chance?
There was another treatment option offered which perhaps will give her, and us, a little more time, but is no way at all curative. And that option is the palliative chemo Hydroxyuera. It’s taken in tablet form twice a day, and reduces all of her blood counts. So, while it attacks the blast cells, it also attacks her healthy platelets and heamoglobin and white blood cells, making her increasingly dependent on blood transfusions and at greater risk of infection. It doesn’t do anything to destroy the underlying disease, but there is a slight hope that the blast percentage might drop enough that attempting a DLI becomes feasible.
For the first time since the original diagnosis, Caroline asked to be able to think about these options overnight, and also wanted to hear what the consultants – who were meeting the next day – thought was the best option. In the end, Caroline has decided to go with palliative chemo, which she started on the evening of June 3. We, and the doctors, are still clinging to the hope that something will eventually work, because without hope, there is nothing.
The word palliative is a scary one, because of its underlying implications. But this is the reality of the situation. Caroline is terminally unwell. She hasn’t left her bed – except to shower and use the bathroom – for the past week because of the pain and her ever-increasing exhaustion. There has been a shift in her mindset from eternal and strong optimism, to a hope that while a miracle may occur, the prospect of dying is real. She uses the word acceptance now, and slowly seems to becoming more at peace within herself of this whole process. She told me this morning that she has this lovely feeling that even when we are apart, it feels like I am always in the room with her, which brings her comfort. I wish I had that. When I actually dare to acknowledge – not accept – what is happening, it brings me nothing but shattering pain.
Today, when I go the hospital to bring Caroline home, I will be meeting a member of the palliative care team. Caroline has already met them and says that they are amazing – they don’t just talk about putting you in a room and making you comfortable before you die. They offer services to keep you living as best as life as you can form as long as possible. And they ask some tough questions to gently prompt you talk about things that, quite frankly, you don’t necessarily want to think about. As such, Caroline and I have to discuss where she might like to die, and where I would prefer it to be. Although, obviously, Caroline’s wishes will override all else. I am worried that if she chooses to die at home, our bedroom, which has been a source of closeness and comfort for 22 years, will become the room that Caroline died in. She’s worried that if she dies at home, I will wake up and find her dead beside me, and that I will be alone and have to deal with it. But, there is also her totally understand and natural desire to say goodbye to her life in the safety of her own home, filled with her love and her life, surrounding her.
Anyway, Caroline is coming home. I will be her carer, as she won’t be able to do much except low-level faffing. In some ways, this a good thing, as I will learn from C how she manages to make such a beautiful home for us. One that I sometimes have taken for granted, but never will again.
UPDATE: An hour after writing this post we have just been told that C’s blasts have dropped from 40% to 15%, so the chemo seems to be doing its thing. This is fantastic news, and also shows what a fucking emotional roller coaster leukemia is. x