Yesterday I began acting on the hospital discharge instructions that I received last Friday night; setting up next-step appointments, mainly. I had been told that I would need a post-op appointment with the surgeon next week Thursday where we finish "staging" and chart the course for attacking these diseases. I called the number for the scheduling person and left my name at the recording and then waited. I finished my book (The Hunger Games) and started another (The Psychopath Test).
Finally the phone rang. Whomever told me "this week Thursday" was confused because as we all know it is spring break this week. She went on to tell me that all the appointment slots the following week were already full and she'd have to bump me to April 17. I told her I was kind of confused by that since it it kind of felt like when I was talking to the doctors that they wanted to get started quicker than that. I have two, aggressive, un-staged cancers in my gut and a bunch of staples and sutures in my back. I have to wait a half a month?
I emailed Coralyn, my kind and efficient care coordinating RN and left her a short list of questions and concerns. She emailed me back and said she'd call with answers before 3:00.
What I am learning about hospitals and specialty doctors is that they are geared very well for moving people through the system after they know what they are treating and who is the expert on that treatment. I keep throwing them curve balls and they keep shuffling me back and forth to the correct specialist. Nobody, including me, seems to know who is in charge of my care. They started me in the unit who is staffed with people who are experts in esophageal cancer. Now that they know that the lymphoma is also a primary cancer, I'm learning that esophagus people don't know much about lymphoma. And surgeons don't know anything about nuclear medicine and radiation oncologists know nothing about chemotherapy and my internist really has no idea about the surgery choices. Cancer is complicated! Or should I say cancers are complicated? That is the real issue. It is not one disease. Cancer is lots of diseases and they all act and are treated differently.
Throw in spring break scheduling to the mix and you have what seems like a bit of chaos.
Coralyn called me back a little after 3:00. Everything is cool. I'm getting my stitches taken out today. I'm getting an endoscopic ultrasound on Friday (I'll be sleeping while they inspect the esophagus tumor with ultrasound to see if they can get a better idea what stage it is). She's setting up a meeting with my Internal Medicine Oncologist for next week. The surgeon will see me on the 17th as scheduled. That extra healing time is a good thing. I'm in good hands.
Now I'm thinking about squeezing in a little work.
3 comments:
It's frustrating but true that different specialists often have no idea what's going on with other stuff.Did you pick Saints or was it insurance choice? Again,you sound great, Chuck. Let us know if you need anything.
xoxoxoxxoxo
Your report is reminiscent of my father's journey.
Catching up on missed blogs. This one sounds oh so familiar. Keep on those specialists Chuck, you are the one in control here, with knowledge of all the little pieces. Don't ever let them forget one. You are doing an amazing thing - this blog is helping many of us deal with your trials. Thank you.
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