One step forward, three weeks back ...

We have been in Florida for nearly 4 years now and finally it is starting to dawn on Scott that flip-flops are a great invention. However he still hasn’t got the hang of how to walk in them and so today, within seconds of walking into clinic, he tumbled head over heels and twisted, fractured or broke his ankle. The jury is still out but he was sent for x-rays and I’m guessing the fact that they haven’t called me yet with results mean nothing major is showing up. It was, and still is, causing him a lot of pain though and the doc was keen to do x-rays as his bones could be in a bad way after all the treatment he has received. Steroids can lead to a loss of bone density; basically his bones could resemble those of a 60 year old woman! The oncologist will let me know next week if his bones have been affected. Obviously we are hoping that this is not the case.

As for his lovely blood, well all looked good again so he downed another shot of methotrexate. His anc was still a little high at 1750 which may mean yet another chemo increase in weeks to come. This would not be good for his stomach but would pack a little extra punch against any remaining leukemia cells. His platelets were normal at 266. This is the number I keep a very close eye on as platelets are very often the first to drop when something sinister is going on.

I was kind of disheartened to learn that I am ahead of myself on our protocol. I was only off by three weeks but three weeks is a long damn time when you are living this nightmare. I just want to get to the end and start putting some distance between us and cancer. Our obvious fear is the ‘r’ word. Half of all t-cell (POG 9404) relapses occur before week 62 (we are at 72 but it was been 78 weeks since diagnosis – yes today marks 18 months since we got hit by the bloody cancer bullet – a day that I have never yet written about and probably never will) the rest occurring from week 63 to several years later. Having said that, relapse would be unusual after a remission of three years. That is still 80 weeks from now though, a long way off. Yet even when we do finally stumble down in relief and mercy at the hallowed gates of remission, I doubt I will find true comfort there. The worry is here to stay.

I wanted to end on a happy thought but couldn’t think of one so instead I’ll just say that it seems poor Scotty may be about to lose his hair again. No big deal in the grand scheme of things but Scott is obviously scunnered about it. Me too. It’s so nice being able to leave the house lately and not have people stop and stare or give looks of pity. More importantly I can look at him now and not see cancer. Baldness is just so in your face.



Thanks for stopping by and checking on my boy.