The Swell

My face on Sunday, February 7. For the record this is at least 3x its regular size.

If you don’t know me I’m sure you’re thinking “well, that’s a swollen face.” If you do know me, I invite you to pick your jaw up off the floor. To quote a friend “your beautiful face!”

On Monday, February 1 I woke up, looked in the mirror and said to myself “fuck, it’s back.” At the end of 2019 when I had that wild headache that sent me to the hospital, a few weeks prior I had Preseptal Cellulitis (fancy lingo for an eyelid infection that left untreated, can make you go blind. So that’s fun). When I woke up that Monday, my eyelids were swollen like they had been then and I assumed it was back. I made an appointment with the eye doctor “there’s a little debris” the ophthalmologist agreed and sent me on my way with antibiotics and a $20 eyelid wash gel (I’m not sure I believe in this… can’t I just wash my face?). But whatever, when your eyelids are swollen, you’ll pretty much do anything to make it go away.

In the spirit of trying to get my steps in to ease my never-ending body aches and pains, I decided to walk the 45 minutes home from the ophthalmologist’s office. That is until I stepped outside and the sun bouncing off the snow blinded my ginormous pupils. Why? Why did I take my sunglasses out of my pocket this morning? What kind of terrible idea was that past self? I ended up walking about 25 minutes and texting my husband to come get me. “Yeah, I can’t see. Please pick me up.” So he packed the twins in the car and met me at the Walmart parking lot at Upper James and Fennell, I hopped in and breathed a sigh of relief that I didn’t have to walk anymore that day.

I start taking the antibiotics that evening and think “maybe this will cure all the other things that are hurting?” All the while, in the back of my head since that morning, I was thinking “huh – why are my lips a little swollen, too? That didn’t happen last time.”

I awoke on Tuesday morning looking forward to going to the mirror and seeing that the swelling was gone. Except, it wasn’t. “Hmm… maybe it’ll take a few days”. Each morning that week I awoke with a varying level of swollen face. Always my eyelids and the space between my eyes. Always my lips. Some days it was particularly bad, some days it was noticeable only to me. I kept taking the antibiotics despite the fact that
A) they weren’t doing a damn thing and
B) they had now given me a raging yeast infection. Too much information? Yes. Kind of funny? Also, yes.

So I continued on my swollen way. Taking the kids for hikes. Making dinner and snacks. Managing my design work. Finding a way to make it through each day. Waking up every morning not recognizing the face looking back at me — until Sunday, February 7. The picture above is from that morning. I woke up, looked in the mirror and went to find my husband. “Willis?” “Willis. Where are you?” I found him upstairs with the kids. I asked them to leave the room. I looked at Willis and said “something is very wrong. I have to go to the hospital.”

In addition to my obviously swollen face, I felt my throat constricting. As a kid with an anaphylactic allergy, I’m familiar with this feeling and know it gets you to the front of the triage. I buried my head in his chest, had a quick, quiet cry and went to pack my bag. I texted Vanessa (my ER nurse friend) and said:
“I think I need to go to the hospital. Which one would you recommend?”
“St. Joe’s”
“Ok. Should I go to urgent care of just to St. Joe’s emergency?”
“Go to ER. Go now friend. Do you need a ride?”

So, I hopped in the shower, dried off my hair and had Willis and the kids drop me off. This was the first time I was starting to feel scared. My body had been trying to tell me something since December but my bloodwork was all clear. But when your throat starts to constrict, you panic a little. It’s just natural. I’ve been in this situation a number of times and each time, you kind of freak out inside, even if you seem brave on the outside. I said goodbye to my family, jumped out of the car and went to triage.

First stop, the COVID questionnaire “No, I haven’t been out of the country. No I haven’t been around a positive case. No, no, no, no, no, nope.” Then the triage waiting area. As I waited, I overheard other people’s problems. One person had broken their arm. One person was waiting for an ultrasound result. And the person immediately in front of me was having a psychiatric episode and it was heartbreaking. This poor man was there with his wife. He suffered from depression 20 years before and made it through. But this fucking pandemic, it did him in. It was too much. Working from home. Managing his two kids. Trying to be strong. He cracked. He weeped. He asked for help. “Please, you have to help me” he pleaded with the nurses. His wife stood silent and strong in the corner. I wanted to look at her and tell her I understood. That she’s not alone. That it’s going to be okay. But it’s hard to do that with a mask on. So instead, I looked at my feet and tried not to weep along.

When it was my turn to triage I cried. Some of it because I felt so much for the person ahead of me. Some of it because I had been managing to hold it together the last 10 weeks. From there, I went to the next waiting area. The doctor came to see me. I explained all the ailments that I’d been relaying to my doctor. I told him I was pretty sure my whole body was subtly swollen. I told him I was being treated for Preseptal Cellulitis. I told him my bloodwork was all normal. “I’m going to run it all again” he said. He lifted my pants at my shins, he pressed a little. He took off my mask and looked at my face. “I’m worried we’ve missed a diagnosis of Anasarca” he said, then he left with the promise of returning. When he left, I googled Anasarca and may have said aloud to myself “yep, this is it.” Finally, something that put all the puzzle pieces together. Anasarca, for those of us not in healthcare, is a fancy way to say “your whole body is swollen.” It can cause muscle and joint aches, pains and a whole lot of swelling. So for sure, that’s what was happening but… why?

I was shown to a room down a hallway that was clearly overflow. The irony of COVID is the hospitals have the illusion of emptiness because everyone is so spaced out. But in actuality, they’re close to capacity. So my room was sort of a closet. A nurse came in and took some blood. Another nurse came in and did an ECG. Then they told me it would be a while to get the results back. Luckily, I thought ahead and brought the largest book I owned, Barack Obama’s A Promised Land, ringing in at over 900 pages. As I waited, I listened to calming music and read. When I wasn’t doing that, I listened to people screaming. St. Joe’s has a psychiatric emergency, as it should, we need far more access to mental health care in our society. But wow, through the vents I could hear people screaming. Top of their lungs. One (or two?) people were kicking walls. The shelves in my storage closet of a room shook with each kick and scream.

90 minutes later a new nurse came in.
“Hi, how are you?”
“You know, I’m alright.”
”Your bloodwork is pristine and your ECG is normal. There’s definitely something going on, but we don’t know what it is.”
”Okay.”
”We’re setting you up with an appointment for Internal Medicine so they can get to the bottom of it.”
”Okay. So, what do I do now? Do I just go home?”
”Yeah, you can go.”
”What do I do about the swelling?”
”There’s nothing much you can do. Take an anti-histamine and some anti-inflammatories and sleep propped up.”
”Okay, but I’m not going to die or anything, right?”
”No, you won’t die.”
”Okay, thank you.”
I texted Willis and told him to come pick me up.

While I waited for Willis outside in the cold, I called Vanessa.
”They sent me home.”
”WHAT!?”
”Yeah, they sent me home. I have an appointment with Internal Medicine on Friday.”
”Did they do any imaging?”
”No.”
”WHAT?!”
Our conversation continued like that until Willis and the kids picked me up. In a nutshell, she thought they should’ve done some imaging. From an Emergency Medicine standpoint though, I wasn’t having an emergency and it was the weekend and I’m young and “healthy” so, I get it. They sent me home.

The next day I spoke to my doctor and provided her with an update. Three hours later she called me back,
”Did they do any imaging?”
”No.”
”Okay. I’m ordering you a chest x-ray. I want you to go as soon as possible.”
”Okay.”

The next morning, Tuesday February 9, I went for a chest x-ray at 9:00AM. I was in-and-out in 20 minutes.

Less than 24-hours later, my doctor called me on the phone. I’d become accustomed to her calls saying “the bloodwork is great.” Once, she even called on a Saturday to let me know my bloodwork was good because she didn’t want me to worry all weekend. She’s a great doctor and I’m so happy she’s mine. But this time, I could tell by her voice this call wasn’t like the others.
”Danielle?”
”Hi Dr. MacKinnon.”
”How are you?”
”I’m swollen, but I’m okay.”
The rest of the conversation went a little like this: “the radiologist called me on the phone. Your chest x-ray was abnormal. We have no idea what it is. It could be a cluster of lymph nodes, it could be blood vessels, we really don’t know, but I’m scheduling you a CT Scan for tomorrow at Juravinski. Are you okay?”
”I’m okay. I’m glad there’s something and we can get to the bottom of this.”

At 8:30AM Thursday, February 11, I went to Juravinski for a CT Scan with dye. I’d had this one other time, the time I had the wicked headache that led to finding the brain malformation. If you’ve never had a CT Scan with dye, it’s very weird. You feel like you’re going to pee your pants. Usually you don’t (I haven’t), but wow, does it feel like you’re peeing. I can’t remember how long it took, but it was soon enough after my family dropped me off that I thought I’d walk home. Again, in the interest of keeping the swelling down (ha!). So… I left the hospital and walked 90 minutes home. I had to stop every once in a while because A) my breathing wasn’t the best and B) my body still hurt like h-e-double-hockey-sticks.

Within a few hours of walking through the front door, my phone was ringing “Unknown Caller”, which I knew to be my doctor.
”Danielle?”
”Hi Dr. MacKinnon”
This time, I sensed urgency in her “Danielle,” this time was a little more panicked than the day before. The rest of the conversation went a little like this: “The CT Scan showed a mass in your chest. We still don’t know for sure what it is. But Danielle, I want you to go back to the hospital. It could be lymphoma.”
”Okay, so, I should plan to be there for the day, right?”
”Danielle. I think you’re going to be admitted.”
”Okay.”
”How are you? Are you okay? Are you okay?”
”I’m okay. I’m relieved it’s something and we can get to the bottom of it and find a solution.”
She then explained to me that I had to go through Emerg to be admitted, as is protocol but she had spoken to the on-call hematologist — they knew I was coming.

I hung up the phone. I told Willis I was packing my bags and he had to take me back to the hospital. He sent out a sudden out-of-office email and let his boss know what was going on. I was going to be admitted. I didn’t know when I would be back. For us, there was nothing but relief. Finally, I was being admitted to the hospital. We thought that’s what was going to happen four days prior, but now it was actually happening. I was looking forward to being cared for. I was looking forward to fixing this problem.

Before I packed my things, I called my parents. They knew Wednesday’s x-ray was abnormal and that we didn’t know what it was. First I tried the home phone, no answer. Then, I called my mom’s cell.
”Dani?”
”Hi Mom.”
”We’re on a walk, can you wait until we get home to talk?”
”No Mom, I can’t wait. My doctor called, the CT Scan shows a mass in my chest. She wants me to go back to the hospital. I’m going to be admitted. They don’t know what it is, but it could be lymphoma.”

I don’t remember how we got off the phone or what was said. I just knew I was breaking her heart. My dad’s, too. I pictured them there on the sidewalk where I learned to ride a bike; rounding the corner to their street where some kid hit me with his bike while I was rollerblading in my late-teens (I needed three staples) — with tears in their eyes, holding each other, trying to make it home so they could break right down. Knowing there is nothing they can do to protect their little girl. No way to save her from what comes next.