Caleb and I have finally broken out of Houston and are home with our babies!  It was a tough road back, unfortunately. Get comfy…this is going to be a long one.

Yesterday (11/29), I went to the hospital to get what I thought was my final lab work done for this cycle.  I knew they wouldn’t clear me to fly home if my WBC levels weren’t trending upwards so I was hoping that they were following the pattern of cycle 1. Monday night I experienced the same bone pain from the Neulasta shot that preceded the big increase in my white blood cells. I thought I knew what the results would say and was looking forward to the phone call from the nurse saying I was good to go. I thought I knew what to expect for the rest of the day.

Instead, the nurse’s call began with, “Unfortunately…” One word. That one word was enough to start the tears. She told me that my platelets were too low and it wasn’t safe for me to travel. I asked if we could test late in the day and then again in the morning so that I could be on the first flight out of Houston. She not-so-pleasantly told me we might do bloodwork in the morning and that doing labs 12 hours after the previous one would show nothing. That might be true but I still can’t figure out why some medical personnel need to be so rude when they answer questions. When I tried to ask her why it wasn’t safe, she just told me it was “policy.” Let me tell you that “policy” is one word I am sick and tired of hearing in response to my questions. Nothing ever seems to get explained, no matter how I ask or how often. I was finally able to get a “safe” level out of her in regards to the platelets: 50. My test results showed 38. 

So I had failed a test that I was SURE I was about to pass. 12 little points –  I was being held hostage in a Houston apartment for 12 points. I felt like I had done something wrong. I felt like this was information that I would have liked to have had before booking a flight. I felt like my body was betraying me. I also felt like the rug kept being pulled out from under my feet every time I got close to going home.

I was crying. I was angry. But Caleb was angrier. 

We waited hours for the nurse to call back with what was supposed to happen next. “I’ll call you right back” in medical lingo actually means “I’ll call you in several hours.” Caleb wasn’t ready to give up on going home yet so we didn’t cancel the flight. We waited three hours. And then Caleb got to work. 

He called the sarcoma clinic and spoke to a very wonderful person who listened to our little saga. She seemed to understand the urgency and said she would send a message to a different nurse to have her call us ASAP. About thirty minutes later, Caleb’s phone rang, but it wasn’t who we expected. It was the nurse that I had spoken to in the morning. She thought it best to start the conversation with, “I told your wife she wasn’t cleared to travel this morning so I don’t know why you’re calling.”  I’m sure I don’t have to tell you what a big mistake that was. My normally friendly, easy-going husband got his battle face on. 

Caleb explained, he argued. He was finally able to talk to the person he had originally requested to speak to. And so the explaining and arguing and talking in circles began anew. Until he finally asked, “Is it dangerous for her to be on a plane today? Is it going to kill her?” And the nurse very plainly said no.

Now I need everyone to understand that we weren’t trying to do anything risky or dangerous or against medical advice. My health and safety were definitely always the main priority. But not the ONLY priority. And we simply wanted to understand the policies we were being asked to follow blindly. I had kids and appointments I needed to get home to so being told “nope, sorry” without so much as a simple explanation was not acceptable.

Caleb got the explanation. The traveling isn’t the danger. The danger is my platelets dropping lower once I get home and us not having a doctor to monitor them. If they get too low, I’d need a transfusion. Once we finally understood the WHY, we figured out the HOW. All we needed was a way to get my levels checked back home the next day. That’s it. We promised we’d do so and grabbed our bags.

The sigh of relief we breathed on the way to the airport has been one of our biggest yet.

So, the lesson I learned is:  Don’t be afraid to push back when it’s YOUR health. You deserve to know the what the policies are, the reasons behind them. Everything. All of it. One of the biggest weapons against a disease like this is knowledge. Know your body, know your disease, know your treatment, and know everything that comes along with all of it. They aren’t lying when they say knowledge is power. Do whatever you have to and get that knowledge. BE YOUR OWN ADVOCATE and don’t back down.