Day +111 (Monday). The area the Hickman was inserted is healing well, albeit with numerous scars and discoloration, and I'm doing more and more each day. The best thing about not having a line is going swimming again, hands down. It feels incredible and on top of being great exercise, I just find it so soothing. My mum usually comes, we could easily be mistaken for professionals what with us being kitted out in the paraphernalia: ear plugs, nose clip and goggles, the works. It's a good look! We draw the line at a cap as well, that's too far.
A blood test last week revealed a liver reading either not improving or getting worse (not sure why I didn't ask?). Professor Carter himself said he isn't too concerned at this stage, however up your immune suppressant medication to 75mg twice daily. #booface I already had the shakes on 50mg. Anyway, I thought I'd share a bit about the regime I've received this year, before the transplant could even occur.
My first round of chemo FLAG-IDA (fludarabine, cytarabine and idarubicin and G-CSF) was pretty horrendous. It was given while I had 80% leukaemic blasts, and my counts were already dangerously low (which was how the relapse was diagnosed). Do I totally sound like a doctor at this point? So, when you spike a temperature, the protocol is they take blood to grow cultures - to see what if any bugs grow in the sample, so they know what antibiotics to slam you with. They also send you for a chest x-ray. Most of the time they never grow anything or find the cause of the infection (Dr's words).
Two days after I had finished 5 days of FLAG-IDA, I was readmitted with temperatures. The temperatures quickly escalated to a 4 day trip to ICU. This time I actually grew something - a nasty little bug called
Enterobacter clocae complex, who happens to be immune to lots of anti biotics. Unfortunately he was not found before I stopped breathing and passed out, a whole lot of people having to revive me a few times while my family watched on in horror. This asshole bug had it in for me - I couldn't breathe, and needed a mask. I had to be on a machine to keep my blood pressure up. It tried to give me liver and kidney failure and despite my best efforts, I was given a catheter. I lost all sense of time or day, as there were no nearby windows or clocks. I was propped in the same position and could barely move for all the tubes coming out of me. I couldn't drink or move my bowels without asking the nurse first, and I had to plead with them to allow me to use a commode instead of a bed pan. I could go on, but let's not eh?
Suffice it to say I am without dignity 100% now. That hospital stay would last 2 weeks and would probably be the scariest time of my life. It was also a revelation to me, as I told my brother later. I realised I actually didn't want to die, I actually DID care what happened to me and death was not an option. Depression, anxiety and the trauma of already having been through cancer before had confused that for me. So, to 'de-escalate things', my haematology specialist removed the IDA (idarubicin) from the second round. The infection this time was managed quickly - 2 days of temperatures, and 6 days inpatient. They did however find that same nasty little bug again. This time it didn't stand a chance.
Entered remission after the first round.