Monday, December 17, 2012

Chrimbo and Chemo

Chemo starts in January. It’s a complicated schedule, but basically it consists of four days as an inpatient, then three weeks as an outpatient, ie, I’ll be home, but going into hospital for blood tests and other smaller treatments. That’s the plan, short of me getting an infection.  We’ll find out about whether anyone in may family qualifies as a donor in the next few weeks. My doctor tells me my hair will start falling out in week three. No more nits for me! (There’s always an upside.) I’m looking for cotton scarves in my colours. I’m a winter, so the colours that suit me are clear jewel colours and icy tones. Let me know if you see anything suitable. The children will be with different families on different days while I’m in hospital - something I’m yet to organise.

I know that chemo will make me feel sick. I don’t yet know how sick. Before I was diagnosed I was tired and nauseous. On my medication I’m tired and nauseous. I figure it’s more of the same. The thing I’m worried about is chemo brain and being unable to read. Now., I don’t expect to be reading Russian novels, but I would like to read novels. If my brain isn’t up to it I’ll read short stories, and if my brain isn’t up to short stories I’ll read poems, but I have to read something. I don’t want to collapse into being unable to think and read. I need to keep exercising my brain, even if it’s reading poems and doing puzzles.
The school year ends tomorrow; last day of primary school for Matilda. There has been a lot going on, but I’m not stressed at all. She attended her Year 6 Farewell as the least adorned girl and had a lovely time. We’ve been to high school orientation and she’s feeling comfortable. At Presentation Day today she was awarded the medal for Outstanding Achievement (she missed out on Dux by a whisker), and a debating award (she was third speaker on the team that won the regionals). Her fellow students are a lovely group of kids and I was very proud of all of them. I was also proud that her kindy buddy’s parents were so proud of her. They were sitting behind me and her buddy’s mum was crying, and her buddy’s dad asked to shake my hand because Matilda has been so supportive of their daughter this year. Clancy is going to be a school officer next year, and again, she’ll be working with a lovely group of kids and she’ll do well. Banjo has been asking to do more extra-curricular activities next year, but it just isn’t the right time. She can wait.

I’m not feeling very Christmasy, which isn’t unusual for me. I haven’t bought anything for anyone yet. I’ve told the children I’ll order some books and things online and their gifts will be delivered by the postman in January. Usually at this time of year I write a post about how the way we celebrate Christmas makes no sense to me - Northern Hemisphere rituals in the Australian summer, the deep conspiracy that is Santa, the massive waste of resources in the name of Christmas magic, and the work women do to please everyone around them, giving the credit to a fictitious male. It wouldn’t pass the explain-it-to-an-alien test. I’ve noticed that other people have been writing about these things, and how we can make the season meaningful in ways that are consistent with our values and beliefs. I won’t harp on about it anymore.

A friend has lent us the DVD of It’s a Wonderful Life. I already know the film well and I’ve watched it twice with the girls. It is about how life doesn’t turn out how you plan, and the importance of appreciating the people around you. I expect that during the transplant process I will feel very low. I’m expecting there will be times during the process that I’ll just want to die. I hope at those times I’ll think of this movie, because, watching it, I really do feel like George Bailey. I feel like everyone in my community has been so kind to me since I’ve been ill, and that everyone I know, everyone I’ve worked with or done little voluntary jobs with or been to playgroup with or been on a committee with and even the people in my online study support group who I've never meet in real life, is wanting to help me in my time of need. I feel very lucky. You know how they say that everything you need to know you learn at Kindy? I keep thinking of the little poem I learnt in primary school.

Life is mostly froth and bubble
Two things stand like stone
Kindness in another's trouble 
Courage in your own.

Thursday, December 06, 2012

Experts Agree

Last post I was pretty positive about my condition. Thinking I can tick along with medication, and it was now about managing the side effects. Thinking I can blog about other topics now. Lalalalalalala.

But no. My doctor has consulted with the experts on CML (and we have a world expert at Adelaide University) because my case isn’t a textbook case. They agree that I need a bone marrow transplant and chemo, asap. They believe the blast crisis cells will return and may not be so manageable next time, ie, the result may be fatal. More aggressive treatment means going for a cure, and my best chance of survival in the long term.

We’ve stepped up the search for a donor. I’m beginning chemotherapy in January (I could start now and feel crap for Christmas, but no). It’s Hyper-CVAD, if you want to look it up - very sobering. The process alternates delivery of chemo as an outpatient and an inpatient. I’m hoping the chemo can stream into the transplant process, rather than having to start and stop and start again. I’m hoping the whole process will fit into the calendar year. That would be neat. I now have to cancel all my commitments for next year, because although there will be times I’ll feel OK and be able to do things, I don’t know when those periods will be, and I’ll be very vulnerable to infection and need to stay away from crowds. Time to buy a thermometer to carry around with me. And more hand sanitiser. 

Also, I’m changing my medication from Glivec to Dasatinib. It’s a second generation designer drug for CML, and thought to cause a deeper remission sooner. And not have the side effects of nausea and bone pain.

In the meantime, I have a sore hip. I felt quite well on Saturday and started doing some cleaning up, and I think I have sciatica. If it isn’t sciatica, well, I’ll have to get a bone scan. So I’ve been hobbling around. It’s been a bad week for housework. I haven’t bought any Christmas presents yet. Usually I’m finished by October. We’ve had lots of expenses - our little holiday, the dentist and orthodontist, servicing the car, starting high school. Good thing we have Santa transparency here. I’ve told the children their gifts will be staggered. I’ll order some books online that will probably arrive after Christmas. We are each getting a new pillow. And I want to buy the children an electronic device they can read on and use to listen to music, take photos with, and download apps for music practice. Their dad wants to avoid Apple products. He’s doing some research. They have no elctronic devices already, so we're starting from scratch. All suggestions welcome.

Saturday, December 01, 2012

Good news

I’ve had good news this week. I got the results of my bone marrow biopsy and it shows the cells are no longer in blast crisis and there is no sign of malignancy. That’s amazing. The medication is working to repress the leukaemia. The stupid bone pain hasn’t been so stupid after all.

My bloods are stable, although still low, but not dangerously low. I‘m graduating to have a blood test only once a week. It makes such a difference. I feel better too. My concern this week has been in managing the bone pain (hot wheat packs, panadeine). I can see that it is possible to live with this disease; to take the medication everyday and live a normal life, having a blood test every three months just to check that everything is OK. It’s possible. It is also possible that the worst of it is behind me. As cancers go, CML isn’t too bad.

I saw my dentist this week, who said that my teeth are healthy, and thank heavens I’d been getting a check up every six months, and had major work done in recent years rather than having to need major work after my diagnosis. Good job. You never know what’s going to happen.

I was so happy with my biopsy result I made an announcement on Facebook. I hadn’t told everybody yet that I have Leukaemia, so for some of my friends I don’t see so regularly it was a bit of a shock. I thought it would have been a bit naff to announce such seriously bad news when I was first diagnosed. What’s the etiquette for such things? But now that I’ve turned a corner, it’s OK.

People have been commenting that I’m brave, or it must be a nightmare, but I don’t see it like that. I reckon that sickness is just a part of life. We live with uncertainty all the time (and kid ourselves that we don’t). We all have to die of something (I figured I would die from skin cancer, or in a car accident). We’re all going to die sometime. You really do just have to keep calm and carry on. I truly don’t know what else to do. You can’t just collapse, crying into your pillow all day. Especially with children. They still need to have their needs met. It isn’t a nightmare. Living in the DRC would be a nightmare. Having your children shot at on the way to school would be a nightmare. There’s no point in having a ‘why me’ attitude. Why not me? Why shouldn’t it be me who has cancer? I’ve been spending a lot of time in the Haematology waiting room with cancer patients. Everyone is there. All ages and nationalities. Cancer shows no discrimination. But here’s the thing that is brilliant. In our hospital system everyone is treated equally. The medical system in Australia will keep anyone alive, no matter who you are. It doesn’t matter if you are a teacher or mother or a car park attendant or a cleaner. It doesn't matter if you are mean or kind. The doctors will try to keep you alive. Taxpayers' money is invested in everyone who needs medical assistance, regardless of who you are. 

Today I submitted my prescription for my medication. It has to be ordered by the pharmacy and the pharmacist commented that it was an expensive drug. The cost of my medication, taking 400mg a day for a month (and many patients, including me, take 500 or 600 mg) is $3789. I pay about $35. If I lived in the USA I would pay close to $5000, and that’s just for the medication for one month on the lower dose. Patients in the USA would also have to pay to see the specialists (I’ve been seeing them three, then two times a week.), transfusions, injections, x-rays, ultrasounds, biopsies, pathologists (I’ve had dozens of blood tests - perhaps a hundred - seven vials at a time isn't unusual) and hospital stays. It is all very manageable here. I have a lot of people to help me, and I’m aware that if I didn’t have children I certainly wouldn’t have the kind of support network that I have (sure I’d have another kind, but it would be different), and I’m grateful.

If only we had such equity in the education system. Hmm.