Well, at least the insurance company has deemed me healthy. That’s got to count for something, right? I mean it’s only cancer. We can cross our fingers and hope for the best because someone in a room somewhere decided my PET scan this week is “medically unnecessary.”
I’m so glad to know it. Perhaps that means my (incurable) stage four breast cancer is suddenly cured? Good thing the person in that room somewhere has decided this for me. I just wish my oncologist would get on board with their way of thinking. She seems to think it is very necessary that I have a PET scan this week. Especially as my last one (last fall) showed some progression of cancer.
I received the denial letter almost 2 weeks ago and have been fighting every day since trying to get someone to help me navigate the mess. It has gone through several appeals. I keep getting transferred to different “we care” type groups. Seriously, they all have the word “care” in their names. These are special escalation teams to help me advocate and navigate. I want to vomit at all the “care” names. Rick used to do all of this for me. Now I’m doing it alone. I explained that fact to a nice lady named Edith on the phone yesterday morning. I explained how my husband died this spring and I have stage four cancer and must figure this all out and fight for my care alone. He isn’t here to make the call. He isn’t here to pull the strings he was able to pull working for this miserable healthcare company for most of his career.
Why must a person battle cancer and also be required to battle her insurance company? That isn’t right. That isn’t okay. That isn’t health care, that is hell care. That is we don’t care. That is we don’t give a damn about your body, only our bottom line. Why must I need to prove to someone in a room somewhere that I do, indeed, need a PET scan.
Honestly, I’m so over it.
A year ago, I had another scan denied and Rick made a call to someone he knew and at the eleventh hour it was approved. Just hours before the scan I received a call from a Michelle or Melanie or some nice lady with an M name, who said in a most chipper and way too enthusiastic voice, “Mrs. McNatt, I have wonderful news! Your scan has just been approved! Isn’t that great news?”
Major phone pause.
I was so taken aback. I almost couldn’t speak at all. And then the rage came bubbling up inside of me and spewing out across the phone line.
“I’m sorry, Michelle (or Melanie) that is actually NOT great news. It’s great news for me because I am a privileged woman with a husband who can make a direct phone call on her behalf to the right important individual. But that is not great news for the regular woman who is forced to battle her disease and simultaneously battle her disappointing insurance company. I am in several metastatic breast cancer groups and I read all the time about how hard it is to get things approved and how discouraged these poor women are trying to fight for their lives while fighting for their healthcare. And that is not okay. THAT IS NOT GREAT NEWS. That is despicable. That is unconscionable. That is not healthcare, that is hell care.”
She began to cry. I began to cry.
I guess I had surprised Michelle (or Melanie) with my outburst, but I had had enough. I told her it hadn’t been my intention to shoot the messenger, but I hoped my comments were recorded and asked her to please share with the people in charge of making these disastrous decisions about desperate people’s lives.
We hung up and I remember, even in my anger, being so grateful that my husband was able to go to bat for me, pull strings and get things pushed through with our insurance. I was lucky. It shouldn't come down to luck. It shouldn’t be that way. I shouldn’t get special attention, but I was grateful nonetheless.
That was a year ago.
Now I know a whole lot better what the regular woman battling cancer faces on the healthcare front. A year ago I didn’t know I was advocating for what would become my life. My new normal. But here we are.
And can I just say, it’s not like I want a scan. It’s not like it’s some kind of sexy elective surgery or a new pair of shoes. It’s a scan which requires me to drink something radioactive, sit in a dark room for an hour and then place my body perfectly still in a machine. “Perfectly still” is harder than you think these days. Everything inside me is a whirl and a quiet, cold, sterile machine is not exactly comforting. But that’s the easy part.
Then comes the truly hard stuff — the waiting for results. I am often nauseous the entire time I wait to hear what the scan shows. I wish I could tell you that I’m at peace, but I’m not. I am anxious and afraid and so sick of yet another result I can hardly see straight. And this time, I get to do that alone for the first time since Rick’s death. Sure I have people with whom I can share my news. People who “are waiting with me.” People who are asking and want to know. But not my husband. Not Rick by my side to open the test result in MyChart and read it and feel the vulnerable raw of cruel cancer. It will just be another one of the many things I must do alone.
Oh, please hear me. I am not trying to write a sob story or have a pity party. I just want people to know this is the state of things. Please don’t make it political. It doesn’t much matter who is in the White House, this is just a broken, broken system. I know so many people have these same stories. Mine feels pretty rough right now, but I do realize, I’m not special, others are fighting similar battles. I’m so sorry if that is your experience as well. And if you haven’t had to do this kind of fighting, then please just be aware and be grateful.
Finally, I am going to ask you for your prayers. I almost didn’t share this because rarely do I throw something out that doesn’t have some kind of redeeming value. I don’t like to complain or compare my story to others. But I do want people to know what goes on and I do want to intentionally ask for you to cover it in prayer.
All the time people like to say things like, “God will never give us more than we can handle.” That person is wrong. That promise is not found anywhere in the Bible. In fact, it is a complete misnomer. Hard things are given every single day all over the world. Even if that’s not your story, you’d best believe it. What God does promise is His presence in it. He will be IN whatever it is we are faced with. He will be right WITH us no matter how hard or how horrible.
“When you pass through the waters,
I will be with you;
and when you pass through the rivers,
they will not sweep over you.
When you walk through the fire,
you will not be burned;
the flames will not set you ablaze.”
~ Isaiah 43:2
Do you see that wording? It’s not IF, it’s WHEN. You will. I will. We will. Maybe your story isn’t quite as dramatic as mine at the moment. Maybe. But we’ve all got our hard stuff. We do. If not now, then maybe someday.
WHO you lean on in the midst of it makes all the difference. I’m not sure my healthcare company really cares all that much, but I know my Holy God cares very much. And as I type out these final sentences about this absurd PET scan debacle, I know that is why I was prompted to sit down at my laptop this afternoon and write — to remind myself that God cares and carries. He is with me even when I fight companies and cancer and continued loneliness. He is here and He cares. Not because the word “care” is in His name, but because it is in His person.
