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.


Jill in a Box said...

I'm so sorry. That sounds unbelievably difficult. It sounds like you have had a real rollercoaster ride - one minute things sound positive, and the next, a whole different story. I'll be signing up for the food roster - oh, but I have no kitchen at present. Well, I think the Samsung Galaxy tablet thing might be able to do all that stuff you wanted for your electronic gift. Or any of those new tablets that is not an iPad. Is there any other way I can be helpful? Or are you tired of people asking you that? Thinking of you and your family.

Liz said...

As Jill said, Catherine - what a rollercoaster ride. Have just read up on Hyper CVAD - full on. I hope you can blog from hospital so your readers can check in and cheer you on. I have just got my bandanas/scarves back from the woman I lent them to up here (who is out the other side now - yay!) and I'd love to send them to mum, cousin and a friend of mine all went shopping individually and compiled a fab collection. Can you message me on FB with your address (if you'd like them, of course)? I also have a particularly cute little black felt hat that I think would look great on you (gotta love chemo-chic!!).

I am very glad to hear you have a world expert in your corner, and that your doc is someone who goes the extra mile - sounds like you've got a crack team on your case. I hope the hip stops hurting and that a good donor is found ASAP. How does it work - can anyone volunteer to be tested or do they just look to your family and the database? (I'd volunteer for testing but I can't donate anything any more - it's all been trashed!! - bit of a shock to realise that I could tear up my organ donor card as no one wants my bits after cancer!!!!).

Had to laugh at 'Santa transparency' - we have two naturally cynical children and Santa didn't last long in our house. Also had to laugh as we have just bought the boys [blushes] iPods and docks...they both have birthdays close to Xmas so they're getting the dock for bday & pod for Xmas. Sorry to be no use on the Anti-Apple front! Our boys have both become totally obsessed with music (does my heart proud as I was just the same from around this age - I'm keen to facilitate great listening!). Russ (the cyber-savvy one) has disabled 'safari' (Internet) and has the pods set up to just be usable for music (including the wonderful music-borrowing app 'Spotify') at the moment...will see where we go from here in terms of opening them up to other uses. Would love info on those apps for music practice that you mentioned! Our boys' are really into music production apps like 'Garage Band' - they fiddle around on these for hours and then load compositions onto 'Sound Cloud' and chat with fellow enthusiasts! It is a brave new world, alright - and I'm very keen for music-related app info so I can (sort of) keep up with it all!!

Hope you have as lovely a family Christmas as is possible in the circumstances. Here's hoping that by next Christmas you'll be coming out the other side. (My family has been reflecing on how far we've come since last Xmas, when i was just finished chemo, bald as a billiard ball, about to start radio, carrying my ear thermometer and disinfectant in my handbag - and only home for a short while - a year later everything is SO much better). A cure for Christmas 2013? Now THAT sounds pretty good!!!!

Joannie said...

Hi Catherine, Thanks for posting. There've been times when posting has been really right for me - like once in the library after having read something I just couldn't believe and felt like screaming - but I got onto the old 'mothers of intervention' had a whinge and it felt better. I hope your blog can work in that way for you - putting it out there. Sorry, I'm not up on the technology but I'll see what my son has to say and get back to you.

2013 will be a big year and too many kids, including mine, haven't learnt how to care. Its good to lean on them from time to time. I think you'll be doing them a favour.

Joannie x

Joannie said...

Hi again,

I had a talk with my son about technology - he wondered why not apple - thought it might have been the fact that they don't give to charities. All in all he thought they would be the ones to give you what your after - but if you really didn't want to go with them there were some lesser options around - he mentioned zoom (I think). He found a great deal that apple is offering at the moment - just in case you'd give them a second thought -

for now, Joan x