In a previous life, I managed a small group of software developers. We were a liaison group, and had four other groups relying on us. I used to tell my team that the biggest part of my job was managing all the other managers' expectations -- if they knew what we could deliver, then they could do their jobs, and we'd all be happy, in the corporate meeting-deadlines sense of the word.
I learned very early in my life as a parent that expectations management is even more important with kids, especially with children as persistent and neophobic as my oldest. You can't just tell such a child, "Time to go, sweetie!" You have to institute an elaborate Early Warning System. EWS, stage 1: "In a little while we're going to the grocery store." EWS, stage 2: "Time to get your shoes on so we can be ready to go." EWS, stage 3: "Two more minutes to play." Then, finally, you get to say, "Time to go," and instead of getting a tantrum, you actually do get to go.
I'm not a laser-focused 4-year-old, but I am human (heh). I like to know what's going on, and so I ask a lot of questions. When I get answers, especially from my doctors, I believe them.
I saw my endo last Tuesday, and the upshot was: 1) start the LID (low iodine diet) because 2) we're giving you Thyrogen shots and 3) you'll have your whole body scan (WBS) in about 2 weeks. Oh, and call the scheduler to get the ball rolling.
That same day, I called the scheduler, she said, OK, I'll put the order in for the drugs, and we'll go from there. She said she'd call me when she had everything set.
I called the scheduler this morning to see how things were going. No word on the drugs, and we can't schedule the scan until the drugs are in house, but that doesn't matter anyway because we're scheduling scans at the end of the month, now.
Quick check of the calendar: May 9.
The end of the month!?
So then we have a conversation: Why am I on LID?
You don't need to be on the LID... it's too soon.
LID is recommended for at least one week, preferably 2 weeks, before a scan or RAI treatment. Of course, I had already rearranged my Mother's Day plans because of it, and I have been obsessing over it for the better part of a week, but hey, no harm done!
OK, I take a deep breath to try and let all that settle in, and then launch into the whole "likely" further treatment scenario, and my summer plans (leave June 25, return Aug 3) and the likelihood that surgery would either 1) screw that up or 2) be hanging over my head the entire summer -- some choice, huh?
So, the scheduler is looking into everything to see if we can somehow or other get the scan done, as originally intended, asap, but in the meantime I'm off the LID because I'm not optimistic about that and I wanted to drown my sorrows in a cup of coffee with half-n-half. (It was great.)
I've been fighting off an emotional tailspin ever since that call. I'm annoyed with myself for believing the doctor and not finding this information out from the scheduler the first time I spoke to her. It's my own fault. At the same time, I'm not blaming myself for being hopeful that I could get my treatment done in time for me to go away with the kids. Yes, I am selfish that way, I want my East Coast summer, and I will be massively disappointed if I can't have it. But I'm also grown up enough to realize that I will do whatever my doctor tells me to do regarding getting this cancer cleaned out, so I'll just have to suck it up if my vacation plans get changed.
I was doing fairly well with the knowledge that surgery is a "likely" event in my near future; I think the doctor did a great job of managing my expectations there. It's the expectations of the process leading up to surgery that have been completely bungled, and I'm annoyed and nervous and generally upset. It's just going to take a while to process all this new information and get my expectations back in line -- and it doesn't help at all that the old expectations, while not exactly terrific, included summer on the East Coast, while the new ones make me put that trip into the "highly tentative" category.
I had a great Mother's Day weekend even while dealing with the LID, because I had enough time to process that that was the way it was going to be. Today was entirely different, with way too many palpitations, no patience at all, and a generally trapped and frustrated feeling. And it was all avoidable, if I had only known what to ask the scheduler from the outset.
The moral of this cautionary tale: doctors are not schedulers. If your doctor tells you that you will have a procedure by a certain time, while at the same time telling you to give the scheduler a call, do not plan your life around the time the doctor gave you. The doctor has no clue. The doctor may wish for you to have a procedure by a certain time, but the reality is, this is something they have little, if any, control over. The scheduler has all the necessary information and the power, and no matter what the doctor says, until the scheduler nails down a date for you, you are not having that procedure.
Since I have no control over the progress of this disease, I like to think I at least have a handle on my treatment. Uncertainty is the worst thing of all. I'm comparing how I feel now, with that "likely" surgery out in front of me, to how I felt last October before my thyroidectomy, when it was thought that I might have just the beginnings of papillary cancer. I'm thinking that this is worse, because I know I have to have it (I'm almost sure, anyway), but I don't know when, and I just want to get it over with! Back then, I wasn't even sure I had cancer, but at least I had a surgery date. Back then, I knew it would be a thyroidectomy, and now I'm not sure if I'll need to have just a few nodes out or a radical neck dissection, a prospect I find terrifying.
There's no way to know until I have the scan, and I still have no idea when that will be. You can't manage expectations without information, so I'll just have to practice living with uncertainty for a while. I suppose I should get used to it. The idea that I have any control at all is a useful delusion, sometimes, but right now it's just getting in the way.