Thursday, January 31, 2013

Ready for Round Two

Next week I’m going back in for the next round of chemo. For me, it is Part B of Hyper CVAD, which my doctor tells me is more intense. I’m not sure if that means I‘ll feel sicker. It means my bloods will plummet more dramatically and there will be a greater chance of needing transfusions. I’m planning to be out of action for about three weeks. At the moment, though, I feel quite well. I’m surprised by how well I feel. I saw my doctor yesterday and said I think we can stop the treatment now. How we laughed! Anyway, I need to remember about recovery when I’m feeling sick. And need to just keep breathing while going through the worst of it (which might be the lumbar puncture and chemo being shot into my spinal fluid).  

I’ve lost my hair. It happened quite quickly when it happened. I tried to hide my head from the children - it made me look sick. I got my head shaved at the hairdressers’ and was glad to be rid of the dead, patchy mess. My children don’t like seeing me bald. It reminds them of the film of Roald Dahl’s The Witches. I’ve discovered I need to wear strong colours on my head, otherwise I look unpunctuated. I’ve been given some scarves, and I’ll buy some more head coverings from an online store. It is quite cold in hospital and I’ll be needing to cover my head to sleep. And I’ll be trying to keep my eyebrows neat.

I’ve been getting prepared for the year to run without me. The children are being more independent, and are doing their chores at home, and being more organised. It will be more challenging as all the extra-curricular activities begin. They’ll just have to work everything out. And so will their dad. Now that the structures are mostly in place, I’m talking to them about what to do when things go wrong, as they inevitably will. Who to talk to, what not to do. Second tier structures.

I know I’ve been saying that I’m having a bone marrow transplant, but actually I’m having an allogeneic hematopoietic stem cell transplant. My donor sister will have her stem cells harvested from her blood. There is no digging into her bone marrow. She needs to take G-CSF injections for the few days prior, to make her blood cells come out of her bone marrow, then they take her blood, do the whirlyjig magic to extract her stem cells, and give her back her blood. It isn’t very intrusive for her. Me? Ah. I asked my doctor what are the chances of me dying this year, due to the procedure. She said my chances of dying are probably less than 10%. The transplant doctor, who I will meet in about a fortnight, might revise that figure. Hopefully revise it downwards. If I went into a raffle thinking I had a 10% chance of winning, I would consider that good odds. And afterwards I have about a 30% chance of having chronic graft-versus-host disease. I need to remember that people can die from lots of causes at any time, and that the consequences of me not having the procedure are more life threatening. My doctor calls my disease sinister. CML tends to turn into explosive ALL and that is what we are trying to avoid. The transplant is my best chance. So, on we go.

Wednesday, January 23, 2013

How not to be annoying in hospital

I’m out from a further four nights in hospital. I didn’t react well to chemo - trouble keeping food down, rash, numb fingertips (which makes typing a little tricky), and then a temp which means a stay in hospital on IV antibiotics. It’s interesting to me how people relate to their conditions and find new (or old) identities as patients. We choose what kind of patient to be. I’m trying to be quiet, and polite, and duck off to the Patient Lounge when I can.

Here are my handy tips on how not be be annoying in hospital.

* Maybe turn off the tv when visiting hours (9am - 8pm) are over. Only turning the tv off between midnight and 5.30am isn’t very restful.
* Ask people not to call outside visiting hours. The phone ringing at 10.30 pm is not cool.
* Mornings are busy with hospital business. Patients need to nap in the afternoon. It would be thoughtful to not fill the afternoon with visits from extended family, work colleagues and friends all afternoon.
* If you need to use the bed pan when you move your bowels, have the air freshener handy, or ask the nurse to use it.
* Know where you are. The Haematology Ward isn’t the Oncology Ward.
* Don’t leave smelly food uncovered.
* Don’t complain about the tiny ting sound of a text message received by the quietest patient.
* If you vomit every hour, sounding like a drowning roar, perhaps try eating sitting up, accepting advice and medication.

And now why it is important. There are seriously ill people in the ward. There are people who will not survive their disease. There are people who are separated from their families, who don’t speak English, who stay in boarding houses between treatments. This last bout in hospital made me very grateful to have Leukaemia rather than Multiple Myeloma.

Now that I’m out and feeling better (the simple pleasure of a boiled egg, a cheese toastie), we’re doing our back to school preparations. For me that means setting up structures so the family can function without me. Asking people to help out so that children can attend dance class and music lessons. Making sure their dad can take them to weekend appointments - he'll be functioning like a single parent. I’ve just put handfuls of hair in the bin. I’m planning to get the back to school shoe shopping and some other chores done before I shave my head.

And once again, I have to say, my village has been fabulous. Other families have taken my children while I’ve been unwell, have fed them, entertained them, have kept them safe and happy. I really don’t know what I’d do if I wasn’t part of such a supportive community. Thank you so much. I’m hoping that next summer I can return the favours.

Saturday, January 12, 2013

After chemo round one

Well I’ve done the first round of chemo. Can’t say it is pleasant, but it could be worse. Now I’m feeling rather delicate. Bloated. No appetite. Sore and bruised and punctured. I should recover some this week but the for the moment I can’t imagine going anywhere. I’ve been slowly reading
‘ The 100-year-old Man who Climbed out the Window and Disappeared’ - he’s more lively than I am at the moment.

The good news is that before I started the treatment this week my doctor told me that I have a donor. My sister is a match. So now I can see where we are heading and that we’ll get there.

Here is the sequence:
Diagnosis and shock.
Learning about the disease and telling people.
Lots of tests.
Getting stable.
Chemo first round. (I AM HERE!)
Chemo second round - expected to be ‘more nasty’ than the first.
Chemo third round, the same as the first
Radiation therapy
Bone Marrow Transplant (the main event) - two months in hospital
Six months recovery at home
Wellness and a normal life

One step at a time, and I’ll get there.

Being at home also means getting organised for the next things. I have a few appointments this week, and will need help with lifts and childcare. If anyone can offer and save me from phoning around to organise everything, that would be brilliant. Thanks so much.

Monday, January 07, 2013

An update

While I’m feeling better than I have all week, I thought I’d post an update.

I was in and out of hospital before Christmas. My daughter and I got food poisoning, and I got a temperature, so I went in, was given fluids, and discharged. Then, on the morning of Christmas Eve, I started my new medication (the one that costs $6160.29, but, being on the PBS, costs me $35.40) and I didn’t like it. Another temp and in I went. They kept me in overnight, which meant I was there for Christmas Eve and morning. I was sprung after lunch, so was very happy to see my family on Christmas Day afterall.

I’d suggested to the doctor that I go back to my old medication so I would be stable for my holiday, and he agreed. So, I was feeling OK while we were away. We went on a Sport and Rec camp, which was just the right level of holiday for us. Lots of lovely families, lots of activities for kids and parents, and we were fed. The only weird part about it was Cheater Man. There was a dad there who cheated at everything. He cheated at games against children. He cheated even when he wasn’t playing the game, but would just jump in so he could cheat. He pushed into the lunch line. He’d push his own children out of the way so he could win, even though there was no prize. It was very strange. I noticed that the women in his family didn’t look very happy - quite tight lipped. It must be hard to live with Cheater Man. I didn’t want to say anything to anyone else, at first, but by the end of the camp it was clear that everyone was aware of Cheater Man. When we caught the ferry home, the Ferry Man asked whose child had been sitting on the table. Cheater Man’s wife said it was her child. The table was broken, and someone needed to pay for it. Nothing more was said by Cheater Man’s family, and when the ferry docked, his tribe was seen RUNNING from the wharf.

Anyway, back home I’m back on my new medication and I don’t like it. Lots of bone pain. My face is puffy and red and hot. I’m hoping it will all settle down. I’m having a night off the medication tonight because I start chemo this week. The annoying part is that I have to wait for the hospital to phone me to tell if they have a bed for me and I should come in. Makes it hard to plan. Anyway, I’ve arranged for the children to be cared for by a range of people on different days. I’ll be in hospital for four days, all going well. I have a tablet loaded with my favourite, most beautiful (and all female) music, and some classic e-books. I had a consultation today with a naturopath friend who has advised me on ways to aid recovery from chemo. I also saw my doctor today, who said she’s planning for me to have three or four rounds and then go onto the transplant part of the process (which means two months in hospital). That’s good news, but I need to get a donor first.

So, how are the children coping? I hear you ask. Well, we watched Love Story the other night, and they weren’t too worried. The part about the sickness is treated so unrealistically (no questions, talking to the husband rather than the patient, keeping her in the dark, and some sort of vague treatment even though she is dying and has no chance of recovery) that it is difficult to take it seriously. We also watched the Orson Welles/Joan Fontaine version of Jane Eyre, and Banjo was very worried about the madwoman in the attic. You just can’t pick what children might react to. Banjo has been very vocal about my whole situation. She’s making up songs about mummy’s having chemo and will be bald. My sister has made them a schedule of jobs to do, and I’ve implemented pocket money once more. Other than that, I’d say the children are still mostly concerned with their own wants and needs (Banjo and Clancy are quite obsessed with their ipods - I haven’t got Matilda her 7 inch tablet yet - they’re sold out - she's being very patient), which is what children do, and are taking it all in their stride. They have been giving me extra hugs and kisses though. They say they are a bit sad about me being in hospital but understand it will help make me well. We’re looking at the longterm gain here. Going for a cure!