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.