Friday, November 02, 2012

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.


Liz said...

So, Elvis, your crazy WBCs left the building?!? Man, what a time you've been through. A resounding hooray for that village!!

I know CML and BC are very different beasts, but reading this brought back SO many memories of my chemotherapy treatment last year...

- The fear that came with low immunity. I would shift seats in the cinema or cafe if someone as much as coughed nearby. We even ended up cancelling a longed-for visit from Russ and the boys because two of them had nasty colds - while we were devastated, I was desperate to get through without infection and it seemed too much of a risk. Cried buckets at the time, as you can imagine.

- Hand sanitiser...I never went anywhere without it!!

- The way that your best laid plans can fall apart. On the first day of one of the (all too rare) visits from the guys, a weird lump developed in my chemo arm and I ended up in hospital being checked for a clot. More tears, as it was NOT how I'd planned to spend one of our precious 3 days together.

- Those injections! I had to have Neulasta (a variety of this kind of med) after all but one of my chemo rounds as my WBCs tended to plunge below my oncologist's comfort zone. Didn't have any dramas with it, but was never brave enough for to think I handled my other treatment with guts but for some reason I baulked at giving myself a needle (and the nurses always agreed to do it - fortunately I only needed one every 3 weeks...I suspect if it had been more frequent I'd have been instructed to get my act together!). Feeling like a real wimp now!!!

- Watching my temp...I ended up carrying an ear thermometer in my handbag so I could check it at will!!

- Living like a recluse during the riskiest parts of my last couple of cycles, as I was so desperate to make it to the end without incident (couldn't have done this if I'd been with the family, of course).

- Watching stories on the news that said things like "there were x deaths from this year's flu - mostly of immuno-compromised people" and thinking: Holy shit, that's ME!!! Like you say, it does all get very serious.

- The way that daytime movies (10am sessions which I'd share with a couple of pensioners), long breezy walks and coffees in quiet cafe courtyards became my favourite 'low infection risk' pastimes.

In some ways I suspect that I became overly paranoid about infection during this period (my feelings heightened by the dread of having my treatment stalled and separation from my family lengthened). But the good part was that I made it through without dramas or delays - god knows if the gazillion bottles of hand sanitiser helped, but I'm sure they didn't hurt! I am sending you EVERY good wish for making it through this phase without further incident, and back into the WBC zone that you and your docs are looking for. Sending a big cyberhug - your Cancer Correspondent in Darwin. XO

Michelle said...

Thinking of you. Michelle x