“Hey, they’re sending me to the ER, it’s not just pneumonia.” Panic, confusion, and the smell of pizza surround me. The literal one time I don’t go to an appointment with Lisa is the one time she is being sent to the ER. I’m mad at myself for going to get these pizzas instead of going to urgent care. But this is the situation we’re in now, and I make it to the hospital in thirty-seven and a half seconds.
I run up to her car and asked what happened at urgent care. All she really could say was they took a chest Xray for the cough that she had for three months. The doctor came back three times with fear in his voice, each time saying he was just confirming what he was seeing on the screen. And finally peeking through the door only enough to tell Lisa she needed to drive herself to the hospital and they were going to keep her.
We walk into the ER entrance. The desk is immediately on our right-hand side, diagonal to the sliding door. The woman with short curly hair tight to her head, looks up from her cheater glasses. Barely giving Lisa the time of day asks for her name. Her eyes widen when she said her name and she told us to have a seat. We turn, there’s three rows of seats. The old shiny wooden seats with blue cloth cushions sat back to back. There’s a vending machine in the room. And on the far wall there’s windows with old eighties style blinds that go straight up and down are pulled across them. A stereotypical small-town old run-down hospital waiting room. Filled with crying babies, and older hard-working men with deep cuts on their fingers.
Our bums didn’t even meet the seat before Lisa’s name was called. We walk through the double door to the ER. Lights, beeping, and a sea of people are in there. It’s so busy people are on stretchers in the hallway. That’s where we end up, a stretcher pushed up against the nurses’ station. Overwhelmed. Typically, I am the one to keep it together for my relationship. But waiting here next to the stretcher in the middle of the ER was a lot.
Immediately a doctor rushes over to Lisa. My heart is in my throat, and it’s hard to concentrate on what she’s saying. I know what she is saying is important but fear was taking over in this minute.
This doctor is average height. I’m around five foot four and she’s maybe my height. Dirty blond hair with a white coat. She has those hiking shoes on, the brown ones with the holes in them that Velcro. Striped socks were under the shoes. She’s an infectious disease doctor. She finally says something that sticks. Lisa has lesions or tumors all over her lungs, at least one hundred of them. Just as quickly as we were brought into the ER hallway, we were immediately moved into isolation and Lisa is not leaving the hospital.
“Are you an intravenous drug user?” “Have you been around any birds or lizards?” “Have you traveled to Arizona and gone golfing recently?” No. No to all of that. A cough, that’s what brought Lisa into urgent care with the thought of pneumonia. Not lesions. Not tumors. Not fungus that could possibly be growing in her lungs.
After a week. Too many tubes of blood. Cat scans, X-rays, and doctors. Infectious disease doctors, cardiologists, pulmonologists, rheumatologists, and oncologists. Each one dumbfounded. Lisa is a perfectly healthy person from the outside. But inside her lungs have these things on them or through them, the doctors are not sure at this point. Test after test came back within normal ranges. The only thing off is her inflammation count, it’s high. Our last hope is a test called an ANCA test. It’s a test that could possibly point towards vasculitis in Lisa’s lungs. Essentially her lungs make antibodies that attack themselves and create these holes in her lungs.
Muddy water is what she’s called. Doctor after doctor is not convinced of much of anything. But they’re especially not convinced that she has a form of vasculitis in her lungs. What is there to do in these situations? You stay up all night over thinking, worrying, wondering. The worry starts to turn to anger and I feel the next doctor to turn us away without taking an actual look at her file I’m going to blow up on. That’s not me. I’m quiet, reserved. You don’t know how I’m feeling unless I tell you, and even then, I won’t tell you the entire way I’m feeling. I’m respectful to those who have gone to school for medicine, and patient enough to sit and wait for a very long time. But not for this, how can you find patience when there are no answers?
Fast forward a bit. We finally find a doctor in Boston who reads more than the top line of Lisa’s file. And we come up with a plan. We do a biopsy of her lung and that is finally going to give us an answer definitively. Cancer or vasculitis.
Vasculitis, GPA Vasculitis technically. The new name for Wegener’s Disease. In a nutshell her lung tissue attacks itself and causes holes in her lungs. She’s been breathing with a half of a lungs capacity. To add a little frustration to the happiness they don’t know why this happens. That’s okay though, we have an answer. More importantly we have a plan for treatment.
Treatment is infusion therapy, a drug used for leukemia patients that wipes out her immune system to get rid of the bad antibodies in her lungs. Every six months for the next two years with the end game being remission.
We’re a year into these treatments. The side effects were awful. From the high dose of the prednisone needed to start the treatments Lisa was a different person. High doses like that make people irritable and mean. I truly could not say the right thing for eight months. It was like literally living on egg shells constantly. It’s hard, it can start to drive a wedge in between you and the person. But it’s up to you to remember its not them it’s the medication speaking.
Her throat closed the first round of her infusion. We were warned of this. It’s so much medication all at once in your body. Your body freaks out and tries to fight it off. Lisa’s throat started to close. Fear took over her eyes, and I felt helpless. They caught it early which was lucky.
More than just the physical side effects that affect the person and the relationship, the stress eats you alive. As much as you try to be there for the other person there are days where you break. There are days when you are pushed away. And there is a time when you are given and out of your relationship because this will be a lifelong struggle. Life must adjust. You can’t just have anyone over during these treatments. You must be more selective of when you chose to go out to have some sense of normalcy. It’s almost like you feel the need to shut out the world and shelter in place to protect the one you’re with. I admit that I am overprotective majority of the time. This global pandemic didn’t help that. But at the end of the day. Going through this process, the unknown, fear, stress, and treatment. This whole thing has reminded me to appreciate your life and your partner. As cliché as it sounds life is short. A trip to urgent care can send your world into a different kind of spin and it will make or break you. Family time holds more weight to me. Responding to that email can wait until I’m back at work. And I try to watch my words more carefully. My person was very close to being taken from me, and I remind myself of that daily.