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.