I was sitting down when I heard the words. Your husband has a brain tumor.
We were back in emergency department. I was sitting next to his stretcher with his parents. The curtain was drawn.
The doctor gave us all the information he knew: a large mass in his brain, surgery was likely, Chris will be admitted and seen by a neurosurgeon. I didn’t look the doctor in the eye, but watched his face and mouth move as he told us what would happen next. Although I understood his words, a tragic but necessary disconnect occurred between my emotions and the reality of the situation. The doctor had dark hair and was wearing green scrubs. At least that’s how I remember him.
Regardless of what he looked like or wore, I thought through the future of my life in a matter of seconds while he spoke. My husband has a brain tumor. There will be surgery. Then Chemo. (How awful.) Suffering. (For how long?) Then Death. (Obviously.) A funeral. (That will be so sad). Grief. (Easier or harder than when my mom died?) I will be such a young widow. (Will I ever remarry?)
After he was admitted, I started making phone calls.
To his advisor at grad school: Well, the reason Chris was so off for his defense was because he has a tumor in his brain.
To his not-yet Boss of his not-yet started new job: I don’t know what to say. Chris passed his Ph.D defense Thursday, but is probably going to have brain surgery this week. I know he’s supposed to start working for you this month. I have no idea what is going to happen or if he can do the job you hired him for when it’s all over. I just wanted to let you know. I’ll be in touch.
To the boss of my I’ve-had-it-for-a-month (and they don’t have to renew my contract after 3 months) new job: My husband’s in the hospital. Brain surgery. I don’t know when I’ll be back. I’m sorry.
To our COBRA insurance: You got my check (the one I didn’t want to write) covering Chris before his job starts, right?
To my former boss, the nurse manager of the ICU an hour away from where we were: This is what’s happening here. Talk me through this. What doctor is on the unit that I can talk to? Do they know anything about this hospital and it’s surgeons?
A friend’s husband, a neurosurgeon: Do you know this hospital? These doctors? (He knew of the neighboring hospital and it’s doctors.)
My family: I need you.
My best friend, a doctor: I’m scared.
And a very close friend, a nurse, who lived in this city and knew the hospitals well: What do you know about this hospital and their neurosurgeons? (She told me she’d want to be at the other hospital if she needed brain surgery.)
This was before smart phones, tablets, i-anythings and traveling with a sleek laptop, by the way.
We signed up for our very first cell phones only three months before this. We still had DIAL UP in our apartment, forgoodnessake. Looking back on it, it was like the dark ages. I was getting all pertinent information second hand.
What I gathered, in a short amount of time, was that we were not at the hospital one would choose to go, should something very major happen to you. The hospital we were at was good. But the large university-affiliated teaching hospital across town had the volume and acuity which gave it an upper hand (at least in my mind, and the minds of those medical professionals I trusted).
The neurosurgeon came into see my husband and did a brief exam. He mentioned surgery and he said they would do an MRI first, to see what the mass was made of. I asked a bit about his training and experience (all impressive and over the course of decades). I mentioned the other hospital and he bristled.
“What would I do if I wanted to have him transferred?” I asked.
“Why? There’s no reason to transfer him,” the surgeon replied, obviously annoyed by my twenty-five year old audacity to think there was even the slightest chance he or the hospital itself wouldn’t do what was absolutely in my husband’s best interest. “I’ll be back later,” he said.
He walked out and I crumpled. I felt stuck. Defeated. I didn’t know these doctors or this hospital. We were out of town. My whole life had changed in the last few hours and now I made the surgeon upset—I basically insulted him to his face. I knew it wouldn’t change how he operated on Chris, but I knew it changed how he felt about us.
I felt helpless. I imagine, this is how most people feel when they go to the hospital, not knowing the medical lingo and have no other choice but to simply trust the physicians and nurses, even when information is overwhelming, confusing, or conflicting.
Deep inside, I knew Chris should be at the other hospital.
Because here’s the truth: not all hospitals are created equal. There are top tier hospitals and other hospitals. There are urban hospitals and there are community and rural hospitals. Some hospitals cater to wealthy patients and some (usually based on location) who serve a population with a low socioeconomic status. There are hospitals that see endless numbers of complex patients and attract the best surgeons. There are good physicians at every hospital, but if you know nothing about the physician, and next to nothing about the hospital, you are allowed to ask questions, find answers, and make changes. You’re allowed to want to be where the people you trust would go.
I wanted Chris transferred because the region’s top neurosurgeon practiced at the other hospital. Maybe I sound silly or impetuous, but I knew it was the right choice. It was a teaching hospital, just like the ones in which I’d worked. It was affiliated with a university similar to the one I attended. I wanted him there for peace of mind and the comfort of knowing the environment.
Shaking off my doubt, I realized: I know the system. I know what to say.
I called the nurse and explained what I was thinking and asked to speak to the nurse manager. When she came, I told her our story, my concerns, and I asked her to be an advocate for us.
That is the magic word. (If you ever need help in a health care situation, you ask a nurse to advocate for you. If what you’re asking for has weight, they will help. If the patient can’t do it themselves, speaking up and supporting your loved one is your responsibility).
Looking back, I’m sure the first hospital would have done a good job.
But I also know what I did was exactly the right thing to do. And if I was in the same situation, I would do it again.
There were hoops to jump through, of course. Like having an attending physician at the other hospital accept Chris as a patient. And figuring out who/how to transfer him. But it happened.
I hate the thought of hurting someone’s feelings or giving the impression of not trusting a physician (or an institution’s) ability to care for a patient. But when you are talking about the actual life of someone you love, and wanting to do what you feel is the absolute best for them, especially in a situation where you have the choice—it’s hardly the time to worry about what someone else thinks of you.
If anyone out there finds themselves in a healthcare setting and worried about asking too many questions or feeling bad for speaking up when your gut is telling you this is best, or this isn’t right—know it’s okay. You’re allowed to ask those questions until you’re comfortable with the plan of care. It isn’t a comfortable place, but it’s the right place. You’re the advocate. And there are people who want to advocate for you, and with you.
Without warning, we found ourselves on an arduous path of uncertainty. For a long time, the one thing I could control and be confident in was this transfer, a switch which altered the course of our journey forever.
To read the first part of this story, click here.
I’ll be writing the next part in the next couple of weeks. (It’s emotional and hard to write… not to mention Chris gets to proof read it all, since this is his story, too. So thank you for letting me write this little by little.) Feel free to follow me on Facebook or sign up by email on the right side of the screen to get new posts when they go up.