I’ve spent the week waiting and wondering. I called my cancer nurse advocate last Friday. She was out, but a colleague called me back. He told me I should hear something by Wednesday or Thursday of this week with the holiday and all. He said that conversation would enlighten me about next steps. So, this week…I waited and waited and…waited. Finally, today at 4pm I called again. I need to be proactive and not just let the VA take their sweet time. This is, after all, MY LIFE we’re dealing with. I reached one of the care coordinators who told me my advocate would be out until Monday but he’d be happy to help me. I explained that it has been almost 2 weeks since my doctor told me I had cancer and that I was still waiting for what was next. He looked at some notes and said that my advocate (affiliated with Roseburg VA) would have her counterpart (affiliated with Portland) contacting me. He also stated that the general surgery team had left me a message on Monday. WHAT?? Do I have to mention how many times I’ve asked the VA to call my cell? Probably not. It would bore you. Then in the back of my mind I remembered seeing that little number on my home answering machine. 7 it said. I remembered it was 6 before but now it was 7. But it wasn’t flashing so the message must have been retrieved by my dad or Dean. It couldn’t have been for me or else they would have said something. The care coordinator tried to reach out to the general surgery team but he kept getting voicemail. That’s one of the things that kills me about the VA, you can never reach a doctor or a clinic directly. It all has to go through a switchboard. Apparently as he was talking to me, he was typing my Portland advocate at the same time. He apologized and said that she had to leave to go catch her bus but that she promised to call me first thing in the morning. A dark cloud just dropped when he said that. By all means, go catch your bus. I’ll just sit here waiting.
I got off the phone and rushed home. That darn 7 burned into my mind. I checked the machine and sure enough it was a message for me. Now it was 4:45pm and the chance of reaching anyone was small but I called and left a message. Then I went for a hike. I was super surprised when I was driving to my hike my phone rang and it was the nurse at the surgeon’s office. To make a long conversation short, here’s the cliff notes. 1)she had my home phone listed as my cell phone 2)they were still waiting for the films from my mammogram/MRI (Portland VA called and asked me where I had been seen on 6/27; the nurse stated the report showed that they were only requested 7/3) 3)she questioned my request for a bilateral MRI (after all why would I want to know if only one breast was affected) and my request for a BRCA test (3 negative but no concern there…). She did say she would run it by the doctor. 4)If they didn’t get the films in time to see me on Tuesday, they could see me the following Tuesday. Apparently they only do surgical biopsies on Tuesdays.
So after hearing all this I was super anxious and upset. I wanted to snap and yell about all the waiting and how awful it was. I was able to hold it together. She told me she’d call me in the morning. I got off the phone and stared at the East side of Mt Pisgah and came to a realization: I do have control in this process. I can ask for what I need/want. I can get a second opinion. I can be my own best advocate. AND I can treat everyone kindly and with love. They are part of my process and if I can wrap them in love I can wrap myself in love. No, they are not going through what I’m going through. Yes, they might say things that feel inconsiderate because I’m super sensitive and scared and uncertain. But, it’s not going to make my journey any better, any easier if I can’t great others with compassion and love.