It’s been ten days since I learned that I have papillary thyroid carcinoma, and I have yet to hear from anyone with any news about what is going to happen next. Because of this, for those of you (the many of you) who commented last week on my entry about my diagnosis of thyroid cancer, I really don’t have any updates. Oh, and once again, thank you for the kind words and details about your own bouts with cancer!
Yes, I’ve done my research. I’ve read through almost everything on the American Cancer Society’s Web site regarding thyroid cancers and downloaded dozens of PDFs from the Web site for the National Cancer Institute and thyca.org and elsewhere. I’ve visited the library, the bookstore, and the information pages at the University of Michigan Comprehensive Cancer Center (where I’ll have my surgery). I set up a listserv last week that allows only me to send out, in one fell swoop, updates about what’s going on with my cancer to over 60 friends and relatives, all of whom are interested in knowing what’s happening next. I’ve had so many long, comforting, informative conversations with so many of these people, in person, on the phone, over e-mail.
Right now, though, I have nothing else to tell them. I need something to tell them. I need something to tell myself.
Yes, I know the statistics. Yes, I know about thyroid cancer. Yes, I’m aware (just as with my Type 1 diabetes diagnosis) that it could be worse (a phrase, by the way, I’ve grown to despise; invoking relativism in the face of one’s own cancer or chronic illness seems to help a person remain at ease for only so long).
The thing I don’t know, as of about 7:30 this morning, is when. When is the surgery? Will it be later this month? Sometime in January? What are the specifics of my thyroidectomy? My preparation? Not yours. Not your friend’s. Not the bloggers who’ve chronicled their experience (and there are many scattered around the Web, many of whom I’ve been reading with rapt attention). What should Eric Lagergren expect? Please, doctor, call me? I want to hear the things I think I know about what’s going on with me from my surgeon, or at least someone on the team who’ll be responsible for removing this cancerous thing. Will it be a complete thyroidectomy? What are your procedures post-op. What does the whole timeline look like? Just break that silence. You’re busy? Sure. I know. I’ve seen medical dramas. I’ve read countless essays and books by surgeons about your field; I know, to a certain small degree, the chaos that can be a surgical team’s day-in day-out.
But right now I also give you a big so what? I am not asking you to call me and spend four hours on the phone. I’d like acknowledgement. Something to grasp onto as I flail somewhat through the dark limbo between diagnosis and the start of treatment. I don’t care that you may not have everything set up for my procedure — you may not have an OR time scheduled, maybe you don’t have all of the information you need for my case. But it’s been ten days. It’s a relatively routine surgery (even though any surgery isn’t really routine for the patient). Some communication? Please?
I have spoken and exchanged e-mails with my endocrinologist, who’s been absolutely wonderful in providing as much information as he can. But again, he’s not my surgeon. Yesterday I wrote to him to say that earlier this week I contacted the cancer clinic to try to get something started. The clinic told me they’d let my surgeon know and have him call. He hasn’t. I told my endo that really (really) I’m not trying to push anyone to do something other than to just please let my wife and me know what’s next. “Yes,” I wrote to my endo, “I know that as far as cancers go, this is a (quote unquote) good cancer to have, and that it has a great cure rate, and that it’s slow-growing. Nevertheless, it is my cancer, and therefore it’s taken the top spot in what both Kathryn and I worry about way too much right now.” We worry predominately because we want/need/would really like to know the when of what’s going to happen next.
My endocrinologist e-mailed a few people, asked them to contact me. Yet yesterday, nothing. Being in the dark sucks.
The diabetes, thankfully, has been on autopilot and managed just fine without my intercession with as many blood glucose checks and concerns over diet (some comfort food has been in order the past week or so).
And that, dear readers, is what I have this week! Sorry I’m preoccupied and failing to write in much detail about living with diabetes. Thyroid cancer’s been riding shotgun. Diabetes, cute little chronic illness that it is, has been asleep under a blanket in the back seat.