I am learning that there are a lot of things that more easily said than done... or in some cases, more fun to say than to have.
Take, for instance, the word, "metastasize." That is a super fun word to say, in all of it's forms... metastasis, metastases, metastasized... so fun to say. Oh, go ahead, you know you are dying to say it aloud, just do it, no one is listening (even if they are, they don't care). However, saying it might be fun, but having your cancer do it is not as fun... in fact, it's scary. Quite scary.
At my follow up visit with the surgeon, she told us that she took out 6 lymph nodes. This was more than she was planning, but she didn't say how many more. The pathology report came back from my thyroid showing... cancer (no surprise) and that 2 of my 6 lymph nodes also had cancer (Surprise! Metastasized! Hmmm... I tried to make it sound fun... Nope, still scary.) I would definitely need radioactive iodine treatment. This was something I was truly hoping to avoid, even though I have been planning on it all along. At my follow up with the endocrinologist, she confirmed that I would need the treatment. Both doctors gave me great advice on what to look for in places to get it done, however, neither gave me an exact name or phone number or instructions. They also both had suggested getting questions answered about specific insurance coverage before proceeding. I felt like this was good advice. I had my questions set. I had reviewed my calendar with my endocrinologist during my visit with her to determine the best time for me, then, I had spoken to my mom about it and reviewed her availability within the correct time period... my window of opportunity was quite small... 1 week, to be exact. I had an exact week that my treatment had to occur. We were now only about 6 weeks out from that particular week and I felt like I needed to get it scheduled as soon as possible so that we could get my mom's plane ticket purchased. I had my date set. I just needed to know exactly who to call.
Researching a nuclear medicine doctor to administer the radioactive iodine was overwhelming. Add to that a sudden fluctuation in mood levels from my thyroid being gone. Add to that PMS. I could not function. I burst into tears and felt like there had to be someone out there that could help me... there wasn't. I needed to make a decision and make a phone call. After a full afternoon of crying, I calmed down enough to call the next morning. We decided on the same hospital where I had my surgery, mostly because they came recommended by my endocrinologist as knowing what they were doing, and their website seemed to really show that. They also promised someone to walk us through the process, step by step, which with feeling this overwhelmed, was something I NEEDED. Right now, I just wanted to walk away, not deal with it. The website promised help... I bought into it, hook - line - and sinker.
Scheduling radioactive iodine treatment is another thing that is easier said than done.
I called the number on the website, I nice woman answered who took careful notes on on what I needed (I could hear her typing into the computer), and asked all sorts of questions. She finally said, "Okay, Honey, I am going to transfer you to the main number for the hospital, from there, you ask for Nuclear Medicine. Here's the main number in case you get disconnected... xxx-xxx-xxxx. Have a great day, and good luck!" The phone rang for the hospital, it went to some hold music for about a minute while I waited for an operator, who then transferred me to Nuclear Medicine. Nuclear Medicine has a menu, I pushed 2 for scheduling. That got me to another woman in the nuclear medicine scheduling department, to whom I explained what I needed... she transferred me to the voicemail of... THE SCHEDULER.
Oh, the scheduler. She has 1 job to do - schedule people for this particular treatment. Literally. When I said what I needed, they transferred me to her desk because she is the only one that does this at the hospital. I had to leave a message because at 9:30AM, when I called, she wasn't at her desk. At 10am, she called me back and asked, "Do you have the order from your doctor?" I told her I would check through the paperwork I had and see if she had given me one because she had given me orders for some blood work and I wasn't sure if the order was with that or not... it wasn't. "I can have her office send it over to you when we get off the phone. Uh -" I was interrupted when I took this breath. "I can't schedule you without the order from your doctor. Have them fax that, along with your patient demographics sheet, and a copy of your insurance card - front and back. Here is my fax number... xxx-xxx-xxxx. I will call you once I have received all of that information. Good-bye." Um, okay... what about finding out if my date was even a possibility so we could buy plane tickets, and checking my insurance and all of the other questions I had? No? Nothing? Okay.
I called my doctor's office and pushed the buttons on the menu - make an appointment? No? Okay, then push this other button to go to the nurse's line to leave a message and we will get back to you as soon as we can. I left a message, explaining, in detail, what I needed and asked them to call me as soon as they had done it or if they had questions, and then I hung up. I then logged on to the electronic chart service for the doctor and emailed her office requesting the information and explained that I had also called and left a message. I then waited 2 hours, but still no call from either office, nor an email reply. So, I called the endo's office again. This time I pushed the menu to make an appointment. I was sent to a real person who took careful notes of what I needed and said, "Okay, I will send this message over to them right now so they can get that information sent out for you." Okay... so the schedulers have to send a message to the office people to send the information. Great... What could go wrong? By 4pm, I still hadn't heard from either office. I was having a hard time believing that the endo's office hadn't sent that information over by then so just after 4, I called the hospital. Wait... how do I get in contact with the scheduler? Okay, hospital main number, ask for nuclear medicine, push 2 for scheduling, then, this time, I asked for her by name... "Um, I can transfer you to her voicemail, but she's gone home for the day." The voice sounded a mix of "matter-of-fact", disbelief, and annoyance, that I would call at this particular time... you know, within NORMAL business hours. Okay, transfer me. I will leave a message, it isn't like I've been waiting ALL day for her to call me! Tears started to well up in my eyes and the more I spoke the more emotional I got. My message once again stated who I was, what I needed to schedule, and that I had a very specific date I needed to schedule it for. I then said that I was running out of time to get plane tickets (fare sale ended the next day) and that my mom wasn't going to be available the whole next day. I had appointments scheduled both of the next 2 days, right in the middle of the day and would not have much time to talk to her. I asked her to please call me before 10am the next day. UGH!
That night, I got an email message back from my doctor saying the information would all be faxed over. The next morning she emailed me again saying it had all been sent. At 10am, I was in the garage, walking out the door to an appointment when my son came running out the door with the phone... it was the scheduler. I was very short with her because I had asked her to call before 10am, not at 10am. "I don't really have time to talk, I am on my way out the door to an appointment." She was annoyed with me. "I know. I just wanted you to know that I never did receive anything from your doctor yet, so I can't schedule you." Now, I was really annoyed. "Well, my doctor emailed me this morning confirming that she sent everything yesterday afternoon. This is the fax number I gave them... xxx..." She was very short with me. "That's my fax number. I don't know why I didn't get it, you can call them and ask them to send it again." At this point, I wanted to scream. No, I can't call them and ask them again... there is no one to ask. No one. When I call, I talk to people who give messages to the people, but I can't actually talk to anyone in the office. Then there is the fact that you are purposely calling me as I am walking out the door. Seriously. After hanging up with her, I ran out the door and called the other office from my car. I gave them all of the same information again, and this time expressed that they had not received the information, even though the doctor had it had been sent and that we were waiting for it. Just before getting home from my appointment, I got a call from the scheduler, she finally had all the information she needed. This time, she would need to wait for me to call her back... and you will need to wait until the next post to find out what happens next.
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