Ding! Ding! End of Round Two!

And no, I won't be extending the ‘fight against cancer’ metaphor.

I do feel much better than I did at the end of Round One, although some other things happened. But I haven’t come home with that haunted chemo look in my eyes ( I hope).

I was in hospital for eight days and feeling like I could just live there indefinitely, which I will be doing in a few months. I’ve learned you can spend all day doing nothing and the time will pass. I can measure out my life in coffee spoons, or my temperature, or latest blood tests. The chemo part went well. I found a doctor who is good at lumbar punctures, and I’ll be asking for him each time. I had a temperature, which meant staying longer, on IV antibiotics. I believe the source of the infection was developing cellulitis at the cannula site. Um, when I tell the doctor or nurse that something isn’t right, I mean it. The next cannula on my other arm became blocked on its second day. It’s a bit strange having fluids dripped into you you that just leak out. Fortunately this all happened after the chemo (no-one wants leaking chemo) and after a blood transfusion (my haemoglobin was too low) and fluids (my blood pressure was too low). Oh, and I met an intern who liked to stick needles into very small veins, and missed each time; my hands, wrists and arms aren’t pretty. I suggest she’d make a good GP but won’t have a career in Haematology. But  I’m fine now. Just have to avoid getting an infection. I’m likely to need a platelets transfusion next week, but we’ll see.

For the first few days I was in my own room. Lovely and peaceful. I could hear 2CH playing from the room next door. It was a comfort. The playlist has barely changed since I was a child. I might bring in my own radio and play 2CH when I have my transplant. And I read Salinger. ‘Raise High the Roof Beams, Carpenters’ which I like very much. (The title is a quote from Sappho.) The other story it is published with, ‘Seymour: an Introduction’ is less successful. Salinger starting to slide down his own crack. I’ve said it before and I’ll say it again, I like the Glass family stories. Seems such a complete world. But I don’t like Salinger as Buddy writing about writing the stories. When, oh when, will the posthumous works be published?? I’m waiting.

I also read Julian Barnes ‘The Sense of an Ending’ which I enjoyed. I wouldn’t consider it a ‘masterpiece’, and I suspect it won the Man Booker Prize because of its brevity. If the judges were seriously shocked by the ending, and impressed by the subtle plotting, they need a slap. I took it as an example of dramatic irony; the reader knows more than the narrator, and there’s the pleasure. It would be a good book for bookgroups to discuss. Linear and brief.

Then I moved to a shared ward where patients had their text message alerts set to horses and ducks. I met a patient who had a transplant last year, and she gave me some tips. Her white blood count had plummeted after a year of recovering well, and she needs a liver transplant. Her condition is more complicated than mine. She hates the procedures and tends to scream during biopsies. I go for the relax and breathe approach. I also met a young woman who became engaged two weeks ago, and last week was diagnosed with aggressive leukaemia. She wasn’t undergoing treatment. She was waiting to talk to the specialist about treatment. And then she went home. It turns out the outcome would be about the same with or without treatment. So now she’s talking about quality of life. She’s a lovely young woman. Religious. Works in a religious institution. Her family are lovely and must be very proud of her. What has happened to her is totally devastating and undeserved. It shows how life can change in a moment, especially when you body does things without your consent.

It is a very strange land the Magic Faraway Tree has delivered me to, and I’ll be back there before the month is out.

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.

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.

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!)
Recovery
Chemo second round - expected to be ‘more nasty’ than the first.
Recovery
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.

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!

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.

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.

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.

Closer, I am, to fine

Last week I taught my ethics class, and went to a yoga class. I’m back to doing normal things. On Monday my wcc was 3.8. Normal range is 4 -11, so I was happy about that. (It has since gone down to 2.2, but nevermind.) On Wednesday my HB was 98. Beginning of normal range is 120. That's the best it's been. I took Matilda to Schools Spectacular* (she now wants to join even more ensembles), we went to a wedding (but not the reception - that would have been too much), and I took Matilda shopping for a dress to wear to her Year 6 Farewell. I’ve booked for us to have a little summer holiday where the children are kept busy and we are all fed. So, I’m saying I’m closer to fine.

My doctor is planning to phone manage me for the next fortnight, which means I come in for blood tests, then go home and talk to her on the phone. Much more efficient. I filled a few extra vials of blood this week so they can tissue type me and then find a donor. The nurse who took my blood asked if it is my first transplant. I said I only plan to have one.  Apparently some people have two. One patient has had three. These are some very expensive patients. They should be marked somehow, so that they have special privileges or right of way or are somehow protected after so much of taxpayers’ money and medical expertise being invested in them. I hope I’m worthy. Anyway,  I have two sisters and one brother who are in the running to be donors, and each have a 25% chance of being a good match. If not, then we go to the international registry. My doctor still hasn’t decided whether I need a bone marrow transplant or not. We’re just getting ready in case I do. She’s going to consult other specialists, and see what the bone marrow biopsy I had this week shows us. (It’s really not as painful as it sounds). I’m feeling OK, except for the bone pain caused by the medication, and some nausea, which are manageable.

I’ve been feeling like I want to spend less time in front of the computer. I’ve been unsubscribing. Cancer has proven to be rather sociable, and it has been lovely to talk to lots of friends. My doctor is quite bemused that I bring a different person each time to my appointment, but really, why not?  I’ll be withdrawing from my university subject this week. I don’t know how I had time to study before this started, but I really just haven’t got into study mode yet for this trimester. I need a break. It’s time to listen to music (Banjo’s new favourite song is ‘California’ by Joni Mitchell, which my friend put on my phone - makes a nice change from Taylor Swift. Tonight I played the White Album while Clancy was helping me make dinner), do drawings, pay attention to the people around me. Really, if not now, then when? I want to reread my favourite New York novels and trace on a map where the characters go. I want to read new books for pleasure. For pleasure! I want to watch the DVDs that my family and friends have brought me. I especially love that my uncle gave a DVD of Bette Davis movies, and my old school friend lent me ‘Jane Eye’ - the Orson Welles version, and other old period costume films. That’s lovely. They know what I like.   

I need to do some cleaning up. I’ve noticed that since I’ve been ill and people have been bringing us dinner, the children have been more lazy. That has to change. The food roster finishes this week and I’ve written a roster for the children to do chores around the house and help with dinner. We’ll see how we go. If I do have the transplant we know we have a food roster system we can implement to help the family.

I got my hair cut. The shorter style shows up the dark circles under my eyes.

Meanwhile, my father, who is 80, has had a quadruple bypass. He came home from hospital., only to get an infection (he may have had it from the start) and return to hospital. He should be back home later this week. My siblings have a roster system to help my parents. My mother is disabled and unable to help him. It has been a quite a time for my family. 

* Schools Spectacular highlights will air on ABC on 16 December, and the longer version on ABC2 on New Year's Eve at 6pm.

New games

Apparently we’re playing a new game: how low can I go? My wcc today was 1.3. That’s low. I have to give myself an injection on Saturday. I’ll be switching to another medication, but the process takes time. I’ve booked a Bone Marrow Biopsy for next week, and I’ve started talking to the Transplant Co-ordinator. I can’t start the process (have my blood typed by the Red Cross, who are involved in the donor matching process) until my bloods come up, so I’m a bit in limbo. Playing the waiting game.

I’m thinking today that I’d quite like to withdraw from my unit of uni. I haven’t made much of a start, and probably have quite enough to be going on with. If I have the transplant the whole process takes a year (four months of chemo, two months in hospital, six months at home, basically in isolation) so it doesn’t much seem to matter if I take a break from study now or later - it will be a substantial break and I won't be ready to do a prac anytime soon.

Also, I’m thinking about my hair. I’ve been keeping it short, and it has recently gone ‘boof’, as thick curly hair does. I could keep it short so I fit in better with the other Haematology patients, and there isn't so much to lose when I have treatment, or I could grow it while I can as a last hurrah for a while. What do you think?

The Village

The village has been out in full force today.

A friend drove me to my doctor’s appointment. I appreciate the company. My doctor had been away for two weeks, so we had some catching up to do. She’s keen to begin the process heading towards a bone marrow transplant. She says I’m a good candidate, as if that’s a honoured and enviable position. Why wouldn’t anyone want to be a good candidate for a bone marrow transplant? The members of my family are back as contenders for being possible donors. My doctor has consulted with other specialists, so now I need to tell my brothers and sisters this is a game the whole family can play. My youngest sister was disappointed when I told her last week she couldn’t be a donor. She’ll be happy now. I don’t know the time frame, nor the ins and outs of the process, but a doctor will be telling me about it next week. Also, next week, I’ll be having another bone marrow biopsy, to see how effective the medication has been at a cellular level.  

In the meantime, my bloods are low. Wcc is 2, and HB is 90. I’ve been feeling tired and woozy today, and my bones hurt.

And here’s where the village comes in. My 8 year had a tummy ache and didn’t want to go to school, so she stayed with a friend while I went to hospital. People gave us food today. Someone brought my daughter home from school for me. My 10 y o is on antibiotics and forgot to bring her medicine home, so I rang the school and the School Principal dropped it off at our house.

And then my friend came over and gave me a mobile phone and a charger, which she had set up with a card, and a number, and one of my favourite albums. I’ve never had a mobile phone before.

It’s been a big day for someone who spent a lot of it lying down. I'm so grateful the village is taking care of me.

More information

Today I discussed with my doctor what I might be planning for. I asked if I should book our Christmas holiday now. She told me to wait a week.

My wcc is down to 2.8. That means I need to keep away from infections and come into hospital if I get a temperature. My HB is 92, which is still low, so, although I’m OK to walk and talk at the same time, I won’t be attempting an exercise class anytime soon.

We talked about what happens next. If my wcc doesn’t go up next week, I’ll be having a bone marrow biopsy sooner rather than later, to see what’s happening to my cells. If the cells in my bones haven’t gone into remission, treatment will be more aggressive. That’s code for chemotherapy. Now, for most patients with cancer, chemotherapy means going into hospital one day each six weeks or so. Not so for patients with leukaemia. For me it means three weeks in hospital, getting chemo, transfusions, platelets, IV antibiotics, then one week at home, then three weeks in hospital, and so on.

I was talking to my friend today about the meal roster, and how I’m feeling better and maybe it isn’t necessary to have a meal roster anymore. She advised me to hold on. We don’t know what’s coming. And if I’m spending three weeks at a time in hospital, I’ll be fine (although I don’t want to miss out on end of celebrations, especially the school Presentation Day), but my family will be needing lots of support.

In the meantime, I’m trying to be normal. I’ve started my unit of study to do over summer, thinking that if I need to withdraw, I’ll withdraw. I do kind of feel like just reading what I like and watching old movies and enjoying myself, but if I’m going to be OK, I’d like to have a unit of my course completed, and be in a better position to finish the degree next year, without too much stress. Lets see how I go. There might be lots of lying around ahead of me.

Nearly Normal

Today my bloods are closer to normal than they have been since this whole thing started. They’ve been up. They’ve been down. There was nowhere else to go. My wcc today is 17 (a little high). My HB 94 (a little low). My platelets 271 (OK) and my neutrophils 14.8 (close enough).

On my pathology request form today I noticed my condition as ‘CML with blast crisis.’ That’s bad. I told them I’d feel a lot better if it just said ‘CML’.

Today, I said to my doctor that I’m thinking, optimistically,  these first two months of investigations and getting me stablised could be the worst part of the whole disease. That is, if the bone marrow biopsy in a few weeks shows no accelerated or blast cells. She said that’s possible. And hopeful. Once I’m stable, I could tick along on my medication (the side effects are not so bad on the lower dose, although I’m still needing a nap every day) with a blood test every few months to just check I’m still OK. However, if the bone marrow biopsy shows no remission, I might be moving onto more aggressive treatment, and that means chemo and/or a bone marrow transplant.

Here’s hoping the worst part is these few months.

Apparently, I’m looking normal. Lets hope the inside soon matches the outside.

Adventures in CML

I spoke too soon about not needing to pack a hospital bag. I’d better post an update before anything else happens.

I've spent two nights in hospital. My wcc was 2.6 and my haemoglobin too low at 73 (normal range for women is 120 -160; that explains why I was puffing as I was walking around on the weekend), so they gave me a transfusion - two units. During the second unit my blood pressure was going down and my temperature going up, so I was admitted. A few bags of IV antibiotics later, here I am. I took a break from the Leukaemia meds, but have started back on a lower dose, and taking antibiotics. On leaving hospital my HB was 92 and my wcc was 2.2, which is kind of good, because if it immediately galloped back up, that would mean the cancer is very aggressive. But it means I have nothing with which to fight infection.

When I went off to the appointment I left my 8 y o with our neighbour, saying I'd be two hours tops. I didn’t pack a hospital bag. When I had to stay I realised I didn't have his phone number, nor could I remember his surname. I rang my friend asking her to walk to my neighbour's house to collect my child. I had to cancel the orthodontist appointment I'd waited six weeks for, and called the school to ask them to send my other kids home with another family, even though I couldn't contact the parents of that other family. My friend who had driven me to my appointment was excellent company and stayed with me for ten hours. She arranged other people to take her kids. Lots of people called me at hospital, and a friend drove me home.  It really takes a village.

In the Haematology Ward I meet other patients. They are at all stages of the Haematological diseases and most seem to have spent long periods in hospital.

When I came out of hospital it was Halloween. My 8 y o wanted to go Trick or Treating. I wasn’t up to it, so asked my other neighbour if my daughter could knock on their door after dinner. She agreed, and then took my daughter to other houses in the street. The village.

The morning after I came out of hospital I had another appointment. Another friend took me, and I packed a hospital bag, just in case. My wcc was 2.0, but my HB was 98. My platelets had risen to 101, which was good. Because my Neutrophils were still too low at 0.3 (normal is 2), I’m now taking injections of  GCSF (granulocyte-colony stimulating factor)  to stimulate my bone marrow. The nurse gave me my first one, but I’m doing the next one at home. I told her I used to give my cat insulin injections. She said I’d be fine. I’m still on the Leukaemia drug (Glivec, if you’re interested), but a  smaller dose. Side-effects? The skin on my face is rough and sore. I have pain in my bones (I can take panadol) and, as before, I’m expecting facial swelling (just pretend I’ve had botox) and swollen eyes (I’ll be wearing my sunglasses more often than usual).

I need to not get an infection. If I get a temperature of 38 I need to go straight to hospital. I’m rallying the family members to put their dirty tissues in the bin and flush the toilet themselves. Two children have coughs. I’m carrying around hand sanitizer. A patient I met who had an fection had been in hospital for a month. It is all becoming rather serious.

So, now I’m on uppers and downers for my wcc to try to settle in the normal range. I’m the Elvis of blood.

Reasons to be grateful

Last night I puked up my meds. Not uncommon, apparently, but not good. I rang the hospital and they said to just try again tonight, but if the meds don't stay down, I need to come in.

Today I'll be asking my pharmacist for anti-nausea drugs that I can get without a prescription. I'll try eating something bland for dinner and take the meds in portions throughout the meal. If all goes well, I'm off to the theatre with my friend. If not, I'm off to hospital.

So, while I'm worrying, I'm going to list reasons to be grateful.

I live 15 minutes away from the hospital and specialist care. It takes 15 mins to get there. More to park.

I get my medical care under Medicare. I'm glad I live in Australia.

I'm not the breadwinner. I don't have to take time off work and plunge my family into poverty because I'm sick. I have a partner who is looking after us.

All my other commitments are things I can take a break from. I can drop my prac, take a break from study and volunteering and my little jobs, and focus on getting well. I am a bit sad about leaving my storytelling job at the library; storytelling using puppets and props, for clients with disabilities. I'd worked on finding stories and how to tell them theatrically, and I'd just about gathered enough that I could retell, so the job was about to get much easier. It was challenging, and I was getting paid to write and perform. Now it is something on my resume. 

Most of all I'm grateful that I have such kind people around me. Everyone who I have told has offered to help. My friend is organising a food roster. People are bringing me comedy DVDs to keep my spirits up, and books to read. People are driving me to my appointments. People have offered to clean my house, pick up my kids, rub my feet, pick up groceries. I really am overwhelmed by how kind people are.

So, I'll be focusing on that today, and trying to stay out of hospital.

Bones

As a child my nickname was Bones, because I was so skinny it was painful for adults when I sat on their lap.

Yesterday my white cell count was 22. That's a freaking miracle - down from 124 last week. That's how crazy this drug is. It's working. I like that it has the word 'live' in its name. I like that I now have my own script and am developing a relationship with a local pharmacist who will order it in each time I need a new bottle. These drugs aren't stored at the pharmacy. They cost $5000 a bottle. (That's not what I pay.) Here's the downside. The drugs make my bones hurt. Now, I have bones in every part of my body, so that's a lot of hurting. It may not all hurt at once, but every part is taking turns. My hands hurt. My back. My hips. My jaw. My feet. This isn't the time to start trying to wear ballet flats.

I'll be seeing my doctor twice next week, down from every second day. I no longer need to pack a hospital bag every time I get my blood checked. I've asked people to take me to my appointments, because I've been too tired to be able to drive home, but I'm finding that it's lovely to spend that time with people. I've been a little less tired, and my head has cleared a little, but I might keep asking people to come with me to my appointments because it's nice to have the company. Next week I'll ask about pain relief. I couldn't take certain ones with the chemo drugs, and I can't take certain others with the Leukaemia drugs, so I'll just wait it out, now I've switched drugs, and be Bones again for a while.  

Today wasn't a day I saw my doctor. I thought I might try going to yoga to stretch myself, figuring if I need to lie down during it, no-one would mind. But no. My two older girls are on school camp. Because we had no driving around to do in the afternoon I suggested Banjo play on the playground equipment. She fell out of a tree and hurt her wrist. I had walked to school (which hurt, but I have to keep moving) so another mum got her car and gave us a lift home. Last night I received a call from a teacher at camp. Matilda had something stuck in her eye and it wasn't coming out. She was uncomfortable. If it wasn't better in the morning they would take her to a doctor. I suggested that a GP wouldn't do anything except send them to a specialist. It happened before when Matilda was a preschooler. A piece of bark had stuck under her eyelid and I took her to the eye hospital. I have a rule now - if something is stuck in an eye longer than an hour I drive to the eye hospital. I'm not messing around with anyone's sight. And normally when a child falls and has an injury I drive to the hospital. This after learning the hard way. Anyway, I wanted to start a new relationship with a doctor who had been recommended (for me, someone more personal and private - the bulk billers were impersonal, the pay up fronts were - well, too expensive and hard to get an appointment). I needed to start again on investigating Banjo's tummy pains. So, we went to the doctor's, then to book the x ray and ultrasound, then home to hear a phone message that the School Principal had taken Matilda to a local optometrist who had removed some stuff from under her eyelid and she was now fine. Then back for the x-ray and wait an hour for the results. I told Banjo that if we had to go to hospital, I would need to come home for a nap first. She looked appalled. O happy day, no fracture, and home for a rest. So the day ended much better than it could have. It's been one of the few days in which I've thought a mobile phone would be handy.

Changing Direction

At last post my wcc was 124 and I started on the chemo drugs. On Saturday my wcc was 120. Not great, but a change in direction, and a significant one. I was instructed to increase the meds. Today, my wcc is, (and I was nervous about this - I'd packed a hospital bag in case I was admitted), 78.6. Good news. My doctor acquired some CML medication for me to get started on while my application for the drug is being processed - quite a bureaucratic process by all accounts.

We also had a quick chat about the possibility of a bone marrow transplant, and starting to look for donors. Good news for my children - they can't be donors. (There goes my threat to make them clean up after themselves.) My doctor thinks we should be able to find a donor who isn't related to me. If it comes to that. 

When I woke up on Saturday morning I felt a little better than I had in weeks. My mind was a bit clearer. I don't feel great - I have cramps and an upset stomach - but I started to feel a little more positive.

I'm in a Facebook group with other students who are mums, and whenever I'm about to go in for a blood test, I've been asking them to guess what my wcc will be. Making it a game. Why not? It helps to not take it all too personally.

A change in direction is good! I hope my wcc will never be as high as that again. More blood tests, and in about a month, another bone marrow biopsy. Now we have to push all my results back to the chronic phase, then into remission.

Another day, another plan.

It turns out my disease is more progressed than we first thought. The bone marrow biopsy results show elements of the next phases, accelerated and blasts. Also, my white cell count has increased over the fortnight since this journey started. I started with a wcc of 70. Today it is 124. So, we have a new plan. I’m starting on medication today that will hopefully bring down my wcc. It is like chemotherapy in tablet form. We had to find a pharmacist who stocks it, and when he gave it to me he said ‘it’s full on’, and ‘good luck’. I’ve signed the paperwork to start on the medication for CML. I’ll be getting my blood tested every second day, and if the results aren’t changing the way we want they’ll admit me to clean my blood or start me on chemotherapy. 

We also had a chat about the possibility of a bone marrow transplant down the track. Although I’m from a large family, most members of my family have a genetic predisposition to bowel cancer. We had genetic testing when my sister was diagnosed. I have one sister who doesn’t have this gene, and I might have to ask her for a big favour.

As for now, I’ll take it one blood test at a time.

wcc

I was going to post a few weeks ago saying that my body has been coming up with new and interesting ways to tell me to rest. I had no idea how true that statement would have been.

I’ve been feeling unwell for the past few weeks. I had a big ulcer on my tongue which stopped me from being able to talk and eat properly.  I thought I was run down. It cleared as ulcers do. Then I realised that through this time I’d actually had a sore neck. While the children were off my hands I popped in to see the doctor, who thought I had a problem with my thyroid, so sent me for a blood test and an ultrasound. That night the doctor rang to say I had to come in first thing in the morning, and if I felt worse to go to hospital. I was thinking I might need to get my thyroid out. When I went in the see the doctor next day everyone in the surgery knew to expect me, and was abuzz that I was there. Not a good sign.

Anyway, it turned out my white cell count (wcc) was 70. The normal range is 4-11. I was given a referral to a Haematologist. I went home and looked online at the words in the referral, and the details of the blood test report. The words that kept coming up were bone marrow, immunology and leukaemia. The specialist is part of the cancer care team. That night I felt worse, so went to hospital. They gave me some fluids and medication and took lots of blood. I saw a member of the Haematology team and organised a bone marrow biopsy to see exactly what is going on and what my treatment will be.

I have Chronic Myeloid Leukaemia. It can be treated with medication I can take at home. Untreated, it becomes acute and is fatal. I’ll be taking the treatment. I don’t know yet what the side effects will be, and how I’ll feel. At the moment I’m just very tired, a bit nauseous and short of breath. I hope to feel better soon. I start the treatment next week. Of all the leukaemias to get, this one is the most manageable, with the greatest survival rate. So, I'm feeling pretty lucky. Lucky that I live in 2012, because this cancer can now be treated with designer drugs, and lucky to live in a city so I have access to medical care. We haven't ruled out chemotherapy at this stage, as more test results are being reported.

The timing has been good. Because I had planned to be on prac I had cleared four weeks to do nothing but that. I’ve cancelled prac, so have a few more weeks to just deal with the sickness and try to get better. I’ve enrolled in one unit of study over summer, but can withdraw if I don’t feel I can manage.

Life can change pretty quickly. I’ll be a keeping close watch on my wcc, and seeing a haematologist, for the rest of my life.

Words on the way out

I’ve already said I’m not using the words ‘sexy’ or ‘hot’ anymore (not that I did use them anyway), because they are so overused they are emptied of meaning. There are lots of other words that could get a run and describe more clearly what we mean: fit, attractive, pretty, glamorous, aroused, and so on.

I’ve also stopped using the word ‘lame’ unless I’m describing someone who can’t walk. I think it is unfair to use the word ‘lame’ as shorthand for an idea that is unworkable, or a joke that falls flat. It’s like saying something is ‘gay’ as an insult. Not on. As we’ve seen in the paralympics, even the lame aren’t lame. So lets just leave it out.

I’m adding another one. ‘Inappropriate’. An overused word that is code for something more specific that we aren’t saying. Especially when talking about issues around protecting children. I realised this when we were talking about how to teach children what songs may or may not be suitable to play in a primary school. Telling children that some songs are ‘inappropriate’ doesn’t give them any direction. We need to be more specific, not just in this case, but, I’ve observed, whenever we use the word. We could say that something is not consistent with policy, or is hurtful or damaging, or unsuitable because, or simply not what we want. ‘Inappropriate’ has had its day, and is on the way out.