Fifteen Days. That is how many days have passed since Ben’s diagnosis. 360 hours. And no one has done ANYTHING. Today we saw the spine surgeon. We were sent there by the kidney surgeon, who had left us with the impression that he needed to work together with a spine surgeon to complete one operation where both the kidney and the tumour on the sacrum would be removed at the same time. That would be nice, however someone should have informed the spine surgeon of that plan, because clearly he was completely out of the loop. According to him, there can be NO surgery for that. The tumour cannot be removed surgically, as it is in the bone.
IN the bone, you say? Because somewhere in the last 360 hours we were assured that it was, in fact, ON the bone. Not IN it. Apparently the CT shows differently, but no one seems to care to keep us informed. “I thought the bone scan was the most accurate tool for determining whether or not there was cancer IN the bone?” I asked. I can’t recall exactly what the surgeon replied, but it was something along the line of, “yes, its strange that it didn’t show up.” And thats about it.
So where do we go from here? Well, I’m not really sure because it appears as though no one can get their shit together and decide WHO IS LEADING THIS FUCKING PARADE??? The kidney surgeon to the spine surgeon to the kidney surgeon….who knows. At least the spine surgeon tried to make some calls while we were there, but no one he tried to reach was available. We left with the promise he would call us back, and guess what? No call.
Why isn’t an oncologist involved, we asked. I guess the oncologists don’t want to get involved until there has been a biopsy so that they know what they’re dealing with. Well thats nice, except no one has offered us a fucking biopsy. Instead, the kidney surgeon said that the kidney needed to be REMOVED. SO REMOVE THE FUCKING KIDNEY! Then you can biopsy it or do whatever the hell you want to do with it. I’m not convinced there is even plans for surgery in the works, because of the kidney surgeon wasting time trying to coordinate with a spine surgeon who apparently has nothing to operate on. 360 hours of COMPLETELY WASTED TIME WITH NO ONE DOING ANYTHING WHILE THE CANCER JUST DOES ITS FUCKING DIRTY WORK.
I feel completely ill. At the time we left the spine surgeon’s office I was in a better frame of mind, because the process seemed simple (remove the kidney, treat the metastasized site with some new, cutting age treatment and then the sacrum that is currently being eaten away by cancer will grow back). But now, I confess to wanting to lean over a bucket and start heaving because no one is taking the lead and getting the ball rolling.
I have lots of friends / family in the medical profession….CAN ANYONE TELL US WHAT THE HELL IS GOING ON?????!! Is this not the ‘cool’ cancer? Because all the people I’ve known with other types have gotten their treatment plan and treatment quickly. I don’t recall hearing about this kind of complete shitty mess with no one doing anything. 360 hours of waiting is only tolerable if there is a plan in place.
Tomorrow I will not stop until I have some answers. I want a surgery date – NOT at the end of May! I want it now. Take the fucking kidney out. GET IT OUT! Then get us into an oncologist and lets get this ball rolling. Oh…thats another thing. The spinal surgeon told us to talk nicely to the assistant in the kidney specialists office, and maybe we’ll get an earlier surgery date. Is this how it works now? Maybe I should buy her a bottle of wine and drop off some flowers. Maybe I can offer her the trip to Palm Springs I was supposed to be heading off to next weekend? Will THAT buy my husband an earlier surgery date to save his life? Or shall we all just sit around with our thumbs up our asses and hope that cancer doesn’t spread more by the time anyone gets their shit together. FUCK YOU CANCER .
(believe it or not, this is actually an older photo. Because this is how the Saint-Onge’s roll every time I try to take their pic. In the past it annoyed me to no end. Tonight it seems fitting)