Yes, I know the title is lame, but I’m running out of ideas. This is from May 16.
One thing, the only thing, I’ve learned that keeps me sane throughout this process is action. I need something to be happening at all times. I need to have an appointment on the calendar. I need to know someone is working on my case behind the scenes. Something to make me feel like we are moving toward getting my life back to normal. A doctor’s office to return my phone calls. Or, hell, I don’t know, ANSWER when I call! And when that doesn’t happen, it makes me crazy. Like, crazy ex-girlfriend crazy.
When I was first diagnosed, they told me it is usually 4 weeks from diagnosis to surgery, but we are fast approaching four weeks and I still do not have a surgery date. I have completed all the various hoops they made me jump through to get to a decision. I have made my decision and informed everyone who needs to know what I have decided to do. Yet here we are. In fact, Dr. Turk’s office is about 4 days late in coming up with a surgery date as I write this. I find it completely unacceptable that these doctors, with their many staff, can’t find time to jump on a phone call and coordinate their schedules. Isn’t this literally what they do for a living?!
I thought, the first time something like this happened, that it was just “how things go” for someone with an as-yet non-invasive cancer. These hospitals are busy and they deal with cancer patients much worse off than I am. But they were the ones who told me that we need to get it out as soon as possible. And I thought that once I did everything they told me to do, that it would be easy to get a surgery date. That is laughable at this point. A surgery date is the only thing I have asked for since Day One, and they still aren’t giving me that. It is impossible to make plans and have a life when you are waiting for a date that will not only leave you unable to lift your arms (or even shower properly) for three weeks, but could also be scheduled for next week or next month! How can they expect anyone to live that way?!
And now, after speaking with a couple of people who have gone through this before, I know that this is NOT the way things are supposed to be happening, and I am right to feel the way I do. I am trying so hard not to fall through the cracks in their system that it is making me angry. And I get angry because that is the only way I can keep myself from breaking down completely over something as small as a phone call. I can count at least two lunch breaks I’ve taken so far just to cry in my car from the overwhelming stress of all of this.
I sent a message to my OB earlier today through our online portal to let her know what is going on. I told her how the surgeon’s office initially botched the referral to the plastic surgeon, but that my nurse navigator was able to fix that. I told her about their referral for the MRI biopsy (back before I decided not to do it) and how I had to make 4 phone calls and sit on hold for 20 minutes just to get that on the calendar as well (after waiting a full 4 days for the hospital to schedule it—they are supposed to schedule any appointment within 48 hours of a doctor recommending it). I also told her about this latest issue with the surgery date. They told me I would have one within 48 hours of making my decision (per standard protocol) on the type of surgery I will have, and I am writing this on a Wednesday over a week after all of this went down. I have called and left messages the past two days and only received a phone call back with an update today. This morning. The surgery coordinator for Dr. Turk told me she had been out on medical leave since last week, and that was why she was only just getting around to my case. She already seemed a little irritated, so I didn’t ask her why no one picked up her slack while she was gone. She said she would have a date for me by tomorrow. (Of course she will. All it takes is for me to have a complete mental breakdown and a threat to find another, less busy surgeon to get some shit done around here.)
I feel like I’m stuck in this really awful group project at school and not only am I the only one pulling my weight, but I’m also having to pick up the slack of the rest of the group. AKA: My newest version of hell.
Anyway, my OB called me after reading my MyChart message and told me that what I am dealing with is not normal. She praised my decision on having the double mastectomy (finally, some actual, doctor-endorsed validation) and also told me what she would do in my situation. She would get a date on the calendar with Dr. Turk, but in the meantime get a second opinion. And then she referred me to her plastic surgeon.
This is what I mean by something needing to be happening at all times. I already feel better, and there isn’t even anything on the calendar yet. It shouldn’t take 3 phone calls just to get someone to call me back. Dr. Turk’s OR is supposedly booking out 4-6 weeks in advance, so every day they don’t set up a date is a day lost in my eyes.
This whole debacle is not instilling confidence in the man I have chosen to cut me open. So, I am going with her suggestion to get a second opinion, and it may end up setting me back another month. Meanwhile, the cancer is growing, but I am trying my best not to let that detail give me an anxiety attack. I’ll let you know how that goes…
And maybe between the two “opinions,” something will happen sooner than later.
But on the bright side, if it does set me back, maybe I will be able to go to my work conference in New Orleans at the end of June… maybe?!
Since writing this, I have talked myself off the ledge. I have taken a couple of deep breaths, slept on it, and I have decided to stick with my original surgeon (Dr. Turk). The day after I wrote this, the surgery coordinator called me back with a date. The first surgery is June 13. This one, with Dr. Turk and Dr. Criswell (plastics) together, will be to take out the masses along with all of my breast tissue. My plastic surgeon will then insert tissue expanders that are attached to a port that I will have filled once a week until the skin stretches back out to the size I want. There will then be a second surgery to finish the reconstruction process.