Imagine everything that could possibly go wrong, multiply by a factor of ten and then work out if it’s possible to exist under the weight of all that crap. It looks forbidding and feels overwhelming. In true problem solver fashion it seems the only way to eat the elephant and the towering pile of elephant crap that’s engulfed me is to break it into bite sized chunks. I’ve done that but some of the smaller pieces continue to choke me. The elephant and its accompanying mountain of dung is huge. I’m small and I realise eating every chunk will take time, months or more likely years. Time, however, is another thing that may run out on me when I least expect it.
I could sit here writing a post about every chunk I’m having have to swallow but aside from the time issue I’d bore you all stupid and might make you cry. I never intend to make other people cry so I’ll only talk about one of yesterday’s two chunks, the rather chewy and partially unpalatable return trip to the oncologist.
I like my oncologist, we get along and although he isn’t everyone’s cup of tea he suits me fine. He’s well researched, straight-talking and not prone to pointless social niceties aka avoiding difficult conversations. My medical situation is vexing him, stretching his knowledge and making him calculate the health and well-being equivalent of complex multiple quadratic equations. I know when he’s confounded because he pushes his hair back, wrinkles his forehead and makes the tiniest shake of his head before releasing a low “hmm,” followed by a period of silence.
The issues in my joints have not resolved. The few other patients Dr C has seen affected in this way all show more improvement than me. I’ve become the class laggard sat on my own in a dingy corner of the room with the dunces cap on my head. At least the cap keeps me warm because I don’t have enough hair to do it for myself. It seems by now my joints should have returned to almost normal. The fact that it takes over an hour every morning before I can bend my fingers even half way towards my palms is far from normal. I never aspired to be a boxer or a cage fighter and it’s just as well because to do so calls for making a fist. No matter how hard I try, I can’t do that. The lack of mobility also means I can’t play the guitar, paint or draw and although I was never going to be the next Segovia or Chagall, I used to enjoy music and art to keep me from going completely insane.
My knees and ankles tell a similar story. They show a remarkable level of inflexibility and a dogged inclination towards constant pain. The pain is the joint equivalent of bad toothache, tiresome, difficult to alleviate and darn right annoying. When I wake up from my increasingly erratic sleep patterns I walk as if I’m a tin robot. My ankles won’t flex properly and the pain surges through my heels each time my feet touch the floor. My knees are uncomfortable standing, sitting or lying flat out. The lady below has more hair than me but she’ll give you a good idea of how I get around these days.
In keeping with his ‘let’s not beat around the bush’ style, Dr C said we should call it a day and stop treatment. He is concerned at the lack of progress with my joints. He’s also concerned that continuing treatment may make the situation much worse than it already is. If he knew about everything else going on in my life he’d know that my joints are almost inconsequential. I have lots more elephant and elephant crap to contend with.
After looking at charts, graphs, discussing the issues of HER2 positive cancers and their propensity to return versus the challenges of possibly permanent joint damage I concluded there’s no benefit in having fully flexible fingers, knees or ankles if I’m not alive to use them. Dr C conceded this point too after a few more frowns and “hmms.” We agreed to restart treatment as of next Thursday and it will entail another whole day in hospital because we have to start from scratch, infuse the herceptin very slowly and watch for at least six hours to ensure no extreme infusion reactions ensue.
I discussed the stop treatment vs. mobile joints with my Dad last night. He drew the same conclusion I did and offered another viewpoint – its possible we might be glad of fully functioning joints in the next world. Unfortunately we have no way of knowing if that’s the case because no-one has ever come back from the dead. My Dad has been researching, he’s good at sourcing and assimilating medical information. He’s also a brilliant man and has always been hugely supportive of me throughout my life. His recent research led him to send on some updated information on the risks and side-effects of my treatment along with the comment “If I were a scare mongerer, I would say ‘Be Afraid, Be Very Afraid,’ but I think you’re already past that stage!” My Dad is very perceptive.
After living in exile for months on end, enduring unpleasant treatments and all the while hoping my life would be waiting for me when the exile was over, I slipped into a place between two worlds, a no-man’s-land between life and death. In that realm I learned that drugs and illness cause physical pain but the most painful experiences inevitably stem from broken promises and misplaced trust.