24 Hours In The ER

Friday morning I woke up and noticed my eye felt a bit weird and wouldn’t open as wide as it usually does. I looked in the mirror and saw that my left eyelid was drooping and my pupil seemed smaller.

Photographic evidence.
Photographic evidence.

I assumed it was a reaction to sleeping terribly all week (or for the past 2 years, really), but then upon discussing with my sister, who had spoken to a physician where she’s working, I started to get concerned it might be something more serious.

I learned that drooping eye + constricted pupil are symptoms of something called Horner’s Syndrome. Add this to the ongoing list of Things I now know way too much about that I never cared about knowing. It’s caused by nerve damage, which can be the result of many things, including a tumour in the lung or brain.

Sound the alarm bells. Ugh.

I really didn’t feel like dealing with more bizarre medical stuff, so I went to work as usual. I contacted my oncologist to see if he thought it was of any concern. He’s usually fairly relaxed about this kind of stuff and takes more of a wait-and-see approach, so I assumed that is what he would say. A couple hours later, while I was eating lunch with my sister, I received an email from a nurse informing me my doctor says I should go to the ER.

So I decided what the hell, I’ll spend a couple hours in emerg, they’ll tell me there’s nothing they can do, and I’ll be home before the end of the day. I packed up my stuff and my sister and I walked over to the hospital.

And this was the beginning of what I will now fondly refer to as 24 Hours In Hell.

I made it through the triage system fairly swiftly and was seen within an hour, which is very speedy in emergency room land.

My first interaction was with a nurse practitioner.

“Hey, I remember you,” I said, recalling having been seen by this same nurse the last time I was in the ER.

“Well yah, I work here,” she shot back, sarcastically.

As you may be able to surmise, this gal’s bedside manner was pretty much non-existent.

She did some neuro tests on me, following my eyes around and making sure I hadn’t had a stroke and all that jazz. She was cold and had no empathy throughout her questions and examination. She then said she’d have to order a brain CT to rule out anything serious. We asked about doing the lung imaging, due to the relation to Horner’s Syndrome, and she said she had never heard of that and would have to look it up. This did not bring me comfort.

I told her I’d prefer not to have a CT as I try to minimize all radiation to my body unless absolutely necessary. She said there would be no way to get an MRI because it takes forever to get one. She went off to talk to the staff doctor and said she’d come find us in a bit. I asked if I was allowed to see a doctor and speak to one myself.

“Ummm yeaaah, I guess. I’ll see what she says.”

THANKS, MEAN NURSE LADY!

She disappeared, and my sister and I were stuck waiting in a couple chairs right in front of the nursing station, as there were no beds or properly designated areas to wait. I sat and watched while a man a few feet away from me was screaming in pain while a doctor performed some kind of procedure, not bothering to draw the curtains. He stared at me the whole time crying in pain. I tried to stare at the floor but it was hard to look away.

All over, people were screaming, whining, coughing. Some from prison, many from the streets, a whole hodgepodge of people in agony smushed into a tiny corner of the hospital.

We found Mean Nurse and asked her what was going on.

“You’re going to do a chest xray, blood work, and a brain CT. We’ll need to see if there’s any kind of metastasis from your cancer and then we’ll refer you to the appropriate clinic after.”

This woman was literally casually talking about the possibility of my cancer having migrated to my brain, in the middle of the squishy, crammed hallway, with zero privacy. She may as well have said, “I’m going out to get some groceries” for how little she seemed to care about what she was saying.

We pushed again for the MRI, and she said she’d check, looking as though she were doing us a huge favour. We sat around and waited some more. She came back and said she managed to get me an MRI slot and it could take a few hours, and in the meantime, I’d be seen by a neurologist.

Ok, so I guess we’re staying here for dinner, I thought. Oh, how naive I was back in those first few hours.

We asked Mean Nurse if there was at least anywhere else we could sit and wait where we didn’t have to watch patients bleeding from their head lying a couple feet from us.

“Nope,” she said, “this is how it is. We’re all stuck in this emergency room shit-hole together.”

THANKS FOR YOUR HELP, YOU HAVE BEEN SO KIND AND PATIENT AS I SIT HERE WAITING TO FIND OUT IF I’M DYING.

Mean Nurse disappeared once more, and we never saw her again. I didn’t know who I should talk to, where I should go, or what I was supposed to be doing. I eventually found my way over to the chest xray, which took two minutes, and then wandered around asking people where I should get my blood-work done.

I found a nurse who said she would take my blood. As has happened to me so many times before, she had problems getting the needle and little catheter tube into my vein and had to press and poke around, causing unnecessary pain. This is when the tears started to come, sitting in another cramped hall while a large man in a bed stared at me. At this point, I was exhausted and starting to get worried, and I needed a good cry. So I let it out, my tears spilling down my face, nose running, red cheeks. Eventually she got the thing to work, took the blood, and then left the tube in to be accessed later for my MRI injection. Because she had put the needle in incorrectly (which I didn’t know at the time), it was difficult to move my arm without pain.

I went back to where my sister was waiting, and then my husband came to join us. It was a real party up in there.

Partaaaaaay!
Partaaaaaay!

After some more waiting, a neurology resident came to check me out, doing all the same tests Mean Nurse had done earlier. He wasn’t really able to provide me with any new information or any indication of what they were looking for, but at least he was the first person who wasn’t a complete a-hole. He said the brain MRI was definitely the right test to order (good thing we had to beg for it), and he’d discuss with his staff physician and get back to us.

More waiting.

The resident returned and told me that they’d like to admit me for the night, because there were no MRI spots available at that time, so I’d have to go first thing in the morning.

“But Mean Nurse told me she had booked me for an MRI and it would happen in a few hours,” I said.

“I’m not sure what happened there, but I called them and you are not on the list. I guess there was some miscommunication. The first slot for emergency cases is tomorrow at 5AM.”

I asked if I could go home and sleep and come back in the morning, but he told me that that’s not how it works and if I stay as an inpatient, the process will move much faster.

“Can I just go home, but pretend I’m here the whole time, and race back in the morning?”

He did not seem to appreciate that suggestion.

The resident apologized for the mixup and that I was stuck there and told us to go over to admitting.

We wandered over to the admitting desk.

“The admitting secretary is on break,” said a woman at the desk.

“Do you know when she’ll be back?” we asked.

“Nope.”

“Can anyone else admit me so I can be in the queue to get a room?”

“No, only she can.”

We waited some more. She did not return. We decided to make a quick escape to McDonald’s. I had already eaten a burger and fries that day, but I figured, if I’m going to die soon anyway, I’m going to shove my face with fast food as much as I can. So we sat in McDonald’s, with a blood-filled tube hanging from my arm, eating some nuggets and fries.

When we returned to the hospital, the admitting woman was back at her post. We gave her our info for insurance, and she told us we should have a room in an hour or two.

We went around the corner to some old reclining chairs where people get blood drawn and perched there for awhile. The hours continued to pass. We went back to the admitting desk to ask if she could check how long until I could get a bed. She said she wasn’t able to tell us that information, as if we were asking for top-secret super spy information. My sister headed up to the neuro floor to see if there was anyone there who could help us out, to no avail.

I walked around to suss out the situation and saw a man being questioned by the police, his entire face and body covered in blood.

More waiting.

A new nurse appeared for the night shift. We asked him to check in on the room situation, and he was happy to help and made a call. He was the first person who actually smiled and seemed capable of compassion and eager to assist us. He was my angel, in the middle of hell.

Nice Nurse told us that I was not getting a room that night. At this point, it was around midnight. Whether the admitting lady had lied to us, or was just clueless, I am not sure. But we were never getting a room. It was all a big lie.

I asked him if there was any way I’d get the MRI that night, and he said not likely, as they only keep two slots for emergency MRIs at night and they had to keep them open.

“Does a young girl with cancer who might possibly have a brain tumour not count as high on the priority list?” I asked, mostly rhetorically.

He smiled. “Fair enough,” he said.

Nice Nurse said he would find a bed in the ER for us so I could at least lie down and try to get a few hours of sleep. We returned to our chairs, eating McFlurry sundaes, while the patient behind the curtain in front of us discussed her leaking stomach, and another patient on the other side of the curtain fainted in the bathroom, causing a massive commotion with several people yelling.

Finally Nice Nurse returned with the best news I’d heard all day: he had a bed for us down the hall. It was just a skinny ER bed, with a half-broken recliner beside it for my sister, but it was a huge step up and felt like we’d just been given a free night’s stay at the Four Seasons. A place to rest my head and catch some Zzzz’s. Glorious!

My husband left for the night to get some rest, and we tucked ourselves in.

So tired.
So tired.

Unfortunately, on the other side of our curtain, was a very loud family that decided to chit chat and talk loudly on their cell phone all night. I tossed and turned for the next several hours, in and out of a sort of half-sleeping state, waiting for 5AM to roll around.

I looked at my watch and noticed it was 6AM. I stumbled out into the hall and over to the nursing station to find Nice Nurse.

“What happened to my 5:00 MRI?”

“An emergency came in, so you’ll now be closer to 10:00.”

I went back to my spot and told my sister, and we cursed at our noisy neighbours who were still being noisy.

“I really don’t want to die yet,” I said to my sister. “I’ll be super pissed if there’s a tumour in my brain. I am so sick of this crap. I know I shouldn’t complain, though, because other people have really hard lives.”

“Your life is hard too,” my sister reminded me.

“I think my funeral would be really packed,” I continued. “It’s so sad to think that I wouldn’t be there, because I really want to see who shows up. If I find out I’m dying, I think I’ll start making a guest list for the funeral.”

Breakfast came, which included corn flakes and bluberry Greek yogurt. I think that’s pretty much the holy grail of hospital breakfasts, so I was quite happy.

Finally a new nurse came by and told me I’d be going up for my MRI shortly and to get in my gown and get ready. WOOHOO! I never thought I’d be so happy to get wheeled into an MRI.

It is impossible to look good in these ginormous gowns.
It is impossible to look good in these ginormous gowns.

Before heading up, the nurse flushed the IV, and it stung like hell. I told her the same thing had happened the night before when it was flushed, but that nurse hadn’t seemed to care.

“That shouldn’t happen,” said New Nurse. “If it’s burning, that means it wasn’t put in right. I’m going to have to redo it.”

This meant that I had that thing dangling from my arm for approximately 20 hours for absolutely no reason.

She took out the old one, and put in a new one, on the first try. She flushed it again, and whaddya know, no burning. This made New Nurse quickly transform into Best Nurse.

A porter came and wheeled me up to the MRI, even though I could walk perfectly, but apparently they don’t let you walk. So I decided to pretend I was royalty and lay back and enjoy the ride.

The MRI was uneventful, same as the ones I’ve had before. Confined space, loud sounds and vibrations, the usual.

After returning to my “bedroom”, a senior resident from Neurology came to speak to me.

After going through a bit of my history and what had transpired in the past 24 hours, he asked me if anyone had explained yet why they were doing the tests they were doing and what they were looking for. I told him no one had really talked to me at all this entire time.

He told me about Horner’s Syndrome–the first person to mention this since I’d googled it the day before–and the possibility of there being some sort of nerve damage causing it. He said I’d done the right thing going to the ER and it was worth looking into, considering my breast cancer history. I told him I’d been told earlier it could take the entire day to get the results, and he said there was no way it should take that long, and he’d push to get the report and would check in an hour. I told him I’d been teased many times before, with promises like his, and he assured us he would return and wouldn’t up and disappear without telling me what was going on inside my brain.

Waiting.
Waiting.

My husband returned and we ate some Tim Horton’s (sidenote: have you tried the new salted caramel timbits? Hella good). More time passed, and our frustration continued to grow as we felt like trapped prisoners with no clue as to when we’d ever be released.

The deadline of when Senior Resident said he’d get back to us had come and gone. We asked a nurse to page neurology and she said she would. More time passed, and nothing, and no one. I walked back down the hall towards the nursing station, a zombie with dark circles under my eyes, shoelaces dragging on the floor, greasy hair hanging over my eyes. I found the nurse.

“Did you page neurology?” I asked.

“Oh, no, sorry, I’ve been really busy but I’ll get to it in a bit,” she said.

A handsome doctor was sitting at the desk, on the computer, and asked if he could help me with something. I explained the situation.

“I know your case,” he said, “I was reading about you this morning. I think your report is available, let me see if I can call it up. That must be really stressful, having to wait for news like that.”

This was the first medical professional who actually acknowledged how I might be feeling throughout this whole ordeal. He quickly became my hero.

He looked at his screen and saw that, indeed, my report was there. He printed it off and went over it with me. No mass found, no metastatic disease or abnormality. Nada.

“Oh, that’s good to know!” I exclaimed, but he had to take a phone call. I motioned a thumbs-up to him, and he smiled. I went back to my spot, carrying the report in my hand.

“So I don’t have a brain tumour,” I told my sister and husband. Happiness all around. My sister let out a huge sigh of relief, revealing she had overheard a conversation earlier where one of the emergency doctors expressed concern that there may be a mass in my brain.

The Senior Resident returned with discharge papers and I told him I’d already accessed the report through Handsome Doctor. He told me they don’t know what caused my symptoms but they’ll be referring me to a neurologist to see at a later point. We all agreed we were glad there was no tumour pushing on my brain, and I thanked Senior Resident for his help.

My husband quickly ushered me out, worried that someone would come back with another reason to hold us hostage for the next several days.

I'm freeeeeee!
I’m freeeeeee!

We left the hospital and went outside, blinded by the light of the sun. My sister went home on her bike, and my husband and I walked home. I immediately jumped in the shower, not having changed in two days and feeling incredibly grimy. I scrubbed hard to remove the hospital smell and the remnants of the past 24 hours.

I lay on the couch, feeling grateful that the entire experience had been nothing more than a very strange and unpleasant day. It is hard to come to terms with the fact that any new medical issue will always be seen in the context of having had cancer, at least for the foreseeable future. I will always have to live with that possibility that the cancer has spread, and a new tumour has found a home in a place I’d rather it not live. I don’t know what caused the eye issues, and I don’t know how long it will be until the next thing pops up that throws everyone into a panic. Hopefully I can get a nice long break after this one.

For now, I feel lucky. I can look back at the whole experience and laugh, and remember it as “The Day I Ate A McFlurry In The ER While A Woman Fainted Beside Me” rather than “The Day I Found Out I Had A Brain Tumour.”

Life is good.

A model cancer patient

On Monday I participated in the Wellspring Well Dressed For Spring fashion show at Holt Renfrew. I got to wear expensive clothes and be fussed over and be a model for a day. I met some great people, many of whom had also had cancer, which of course gave us an instant connection. It is so strange how the second you learn someone else has had cancer, you suddenly start talking about very personal things that you might not even discuss with a good friend. The ties that bind.

Me and another model I met that night, who also had breast cancer, four years ago.
Me and another model I met that night, who also had breast cancer, four years ago. (Photo credit: George Pimentel)

As the show began and we waited backstage to be called, my stomach started flipping and I got extremely nervous. Why did I agree to do something where a bunch of people were going to stare at me? For someone who hasn’t felt very good about her appearance in quite some time, this suddenly seemed like a bad idea. A few of the other models were having butterflies as well. But then I reminded myself, and them, “We’ve all been through a lot worse than this.”

“Very true,” remarked my fellow model. The show must go on. So on it went.

After hearing my name called, I walked up onto the stage, while Amanda Lang from CBC read a short bio about me and my cancer story. As she said the words and everyone looked at me with tears in their eyes, I too started to tear up, which I really didn’t expect. I have no problem talking about my experience and have heard the story so many times. But it still sometimes catches me off guard, when I hear someone else describe what I have been through and where I am right now. It was all a bit overwhelming.

I walked down the runway, and the rest is really a blur. I remember I had had a plan of how I wanted to walk and I really wanted to seem cool and model-y, but that quickly went out the window the second I started walking. Cameras were flashing and everyone was cheering and my grandpa was blowing me kisses and I had a bit of a mental black-out. I really don’t remember walking. But somehow, my feet carried me, to the end, and back. And I didn’t even trip.

The awkward "Hi everybody, I feel weird!" look. You saw it here first.
The awkward “Hi everybody, I feel weird!” look. You saw it here first. (Photo credit: George Pimentel)

After the show, I had lots of people introduce themselves to me, and many people told me they have followed along with me since the beginning. No matter how many times I hear this, it always shocks me. I still have trouble comprehending that anyone other than my mother would be interested in reading my blog.

The evening was wonderful, and emotional, and fun, and exhausting. I am really glad I did it and had the chance to be surrounded by so much love and support. A nice feeling.

The next morning, I got up bright and early to do my final blood draw using my good ol’ port-a-cath. The nurse messed up the first try, so she had to give me a second needle, which was a bit frustrating. But I had a feeling things wouldn’t go smoothly, seeing as it was the last hurrah, and isn’t that just the way it goes.

After the blood draw, I had a check-up with my oncologist (actually, I got to see two doctors because I am just so special). We talked about various issues I’ve been having, and also some stats around recurrence and my odds. It is funny how when I was first diagnosed, I didn’t want to hear any stats or numbers from anyone, because I couldn’t handle how scary it was to talk in those terms. It is still terrifying, but I have a much firmer grasp now on the reality of my situation, and a certain comfort level with it. An acceptance, of sorts. It still feels like a punch in the stomach to hear that after everything I have done, my chances of survival are still not as high as I wish they were (i.e. not 100%, which is what we all wish for… isn’t it?). But my doctors do seem genuinely optimistic, and I fully believe that they are not bullshitters, which is why I have allowed them to remain a part of my medical team. I like real talk. I also like hope. And they give me both. So I actually came away from this appointment feeling fairly good, especially after being told I will now get a nice THREE MONTH break from hanging out with cancer doctors, which is the longest I’ve ever had. So that is quite thrilling.

After my hospital morning, I went home to change and headed up north to attend Naomi’s funeral. The service was beautiful, with touching eulogies and stories shared about this amazing woman. I feel so lucky to have known her and to have gotten to know some of her friends and family. Of course, as nice as the memorial was, it was also extremely difficult. I wept the entire time, having it fully hit me that my friend is gone, and that someone so important to so many people, is gone. It is a hard reality to face. It is so hard to make sense of why these things happen. To know that it happened to such a loving, amazing family, who deserved nothing but happiness. It is all just terribly unfair, and my heart aches for all the people who are feeling the loss of Naomi and all that she brought to this world. I am also confronted with having to face my own mortality, and the notion that it could just as easily be my funeral, and my family left behind. The death of a friend causes many emotions to stir up, and in this case, maybe a few more. It is hard, to say the least. But I’m so glad I got to be a part of saying goodbye to someone who had a very significant impact on my life.

And, since my week wasn’t cancer-filled enough… today, I got my port removed. I was initially supposed to be sedated for the procedure, but I called yesterday and asked the nurse if I could do it without any drugs. She said I could, if I felt relaxed enough about it. And I told her, honestly, I really just didn’t want to fast all day, because not eating for one day is just way too challenging for me.

So today I made my way to another hospital, and checked in, and commenced a very long wait for my procedure. I had a phone call from someone on the medical team asking if it had been explained to me that I could receive medication and get an IV and all that. I told the guy that I had just eaten a bagel, so that ship had sailed. No turning back.

When they finally called me, I went into the operating room and lay on the bed and stared at all the machines and monitors. I instantly started to wonder if I’d made a huge mistake by offering to be awake. For the port insertion, I had been so nervous that I asked them to give me an insane amount of drugs, and I completely passed out. How things have changed. How I have changed. I have a new sense of bravery about these things that I never possessed pre-cancer.

A young doctor entered the room, looking like he walked off the set of Grey’s Anatomy, which for some reason put me at ease. He explained what was about to happen, asked the usual questions, and then began. I had to have several needles to freeze the area, which didn’t bother me. Then he made his incision, and I could feel a bunch of tugging and pulling that seemed to go on for awhile.

I started to feel very warm and noticed I was feeling a bit faint.

“Is everything okay with it?” I asked.

“Yes, there’s just some scar tissue that I have to scrape out first.”

He continued to remove the scar tissue and I could feel pulling on the vein.

“Are you almost done?” I asked, “because I think I’m pretty close to passing out or vomiting.”

He asked me if I needed a break and I said no, just get ‘er done. Before I knew it, he yanked the tube out and out came the port. Then he sewed me up and bandaged me as I felt my blood pressure return to normal and the room stop spinning. Easy peasy.

And now I am home, a bit sore, after what feels like a very long, highly emotional, exhausting few days. I’m having some bleeding come through the bandage, which is slightly worrisome. If it continues, I am supposed to go to the emergency room. But I am hoping that does not happen. I’ve had enough cancer-related events for one week. Time to get back to watching bad TV, sleeping, and being a regular human being… which, these days, is what I hope for, more than anything.

Me, now. Time for bed.
Me, now. Time for bed.

The end of a not-so-great era

Today I had my LAST treatment. Halle-friggin-lujah.

I rang the bell and celebrated with my friends and family and drank a huge milkshake. It was quite the fun party. I got lots of nice presents. Everyone knows that my favourite part about cancer is the presents. That’s the only thing I like about it, really. But it’s a pretty sweet perk.

Dad hugs post-bell-ringing
Dad hugs post-bell-ringing

 

I have all these confusing, mixed-up emotions. I’m scared of saying bye to all the nurses. I feel like I still need them. I’m scared of saying bye to my drugs. I worry what could happen to me once they’re out of my system. I’m scared of getting too comfortable, and ending up back in that chemo room. It’s hard to say it’s my last treatment without adding on “here’s hoping!” But I really want to believe it’s over. I want this to be the end. Please, please, please, let it be.

I am so over the whole cancer thing. Time for a new thing.

Here’s hoping.

 

Scattered thoughts

Some thoughts from my very tired mind:

  • Today I saw multiple incidents where strangers were yelling at each other and saying nasty things in the street. A streetcar rider mad at an automobile driver. A biker mad at a pedestrian. Everyone just mad at the world, at everyone, and everything. And you know what? These days, mad people are what make me… well, mad. Sometimes I wish I could just touch someone and they’d get a quick glimpse into the hell that has been much of the past year for me and my husband. And then maybe they would think, oh geez, this really isn’t worth getting that angry over. If you have your health, and you have at least one person in your life who wants to be around you at least some of the time, then as far as I’m concerned, you have it pretty good. Can we all just stop hating each other and hating the world for one second? Seriously. Stop. Life is good.

  • Yesterday I participated in a video that will be shown during the first night of the Weekend to End Women’s Cancers walk. After we were finished, I was asked if I would be the speaker at the closing ceremonies of the Walk at the Rogers Centre, and represent all the survivors. I was really honoured and said yes, and asked if instead of reading from a script, I could write it myself. I don’t really think reading someone else’s words will sound anything like me, or necessarily be what I would want to say. So now I’ll have to think of what I want to say. I am not worried about writing it. I love writing speeches. The thing I was most excited for about having a wedding was getting to write a speech (besides the whole getting married thing, I liked that too). So I should be okay in that area. I am mostly worried about being a huge sweaty mess and having my eyebrows melt off my face. Or going completely blank and just saying, “Breast cancer sucks!!!” and having everyone throw tomatoes at my head.
  • I’m thinking of writing a book. Just thinking about it. I have a lot of people really pushing me to do it. So I guess I’m in the early planning stages. In other words, I have written nothing. Well, besides this entire blog, which I guess is something. But there is so much more to say, and such a longer story to tell. I just don’t think I have the emotional stamina to deal with it right now, since I’m trying hard to NOT think about cancer as much as I can. So I might leave it alone for a bit, and tackle it when I’m ready. I’ve already imagined it being turned into a screenplay, and I’ve thought about what I would say in my Oscar acceptance speech. I realize this is jumping ahead a bit and I should probably attempt to write a sentence or two before buying a fancy gown. But go big or go home, right? Right.
  • I went back to work this week on a part-time schedule. It was a bit overwhelming as I had to try to absorb a lot of new information in a short amount of time. But I think I’ll get the hang of it again after a bit more time. I refuse to allow myself to get stressed, or to let anyone else’s stress rub off on me. I can’t really afford to be stressed. And I kind of have this new life perspective now, where it isn’t too difficult for me to separate what is truly worth getting in a panic over vs. what is not. Pretty much almost everything falls into the latter category.
  • I’ve been buying some clothes lately, because it felt necessary after wearing pretty much nothing but pajamas and sweatpants for a year. I remember after I was first diagnosed, I couldn’t bring myself to shop and didn’t want to buy any clothing. It felt pointless, like maybe I wouldn’t live long enough to wear the clothes or maybe I’d never have a need for regular clothes again, or never like the way I looked in anything. I didn’t want to be dead, with a bunch of new clothes, and have to leave my family to deal with getting rid of all them. Clearly, my mind was in a pretty dark state. But it ain’t there anymore. I love clothes. I want more. MORE MORE MORE.
  • Today I went to a check-up at the hospital, where three different people looked at and squished my boobs. While I was sitting in the waiting room, I saw so many scared women, clearly only at the beginning of their “journey”. You can usually tell by who has long hair. I remember being that scared girl those first few months, sitting in the waiting room, wanting to cry in the corner and be pretty much anywhere else. And I’d look at other ladies with short hair, who clearly had just finished their treatment, and I was in awe of them, wondering if I’d ever make it to that point. And as I sat there today, with my almost-pixie hair, feeling confident and healthy, I realized I was at that point. I am now the girl that others are staring at, wondering if they’ll make it over to the other side. Wondering how I survived. Truthfully, I don’t know how I did. But somehow I made it. I am part of the short-hair club. I am someone others look to for hope and inspiration. If they only knew that I laugh when people fall down, or when someone farts, then maybe they wouldn’t feel so inspired. But that can be our secret.

Hot town, summer in the city

Today I completed radiation #15. 10 more to go. Woohoo!

My skin has started burning a bit more, and I have some very unattractive little red bumps. I also have started to notice that my scar near my armpit is stinging. So that’s not fun. But all in all, still not too bad.

Whenever I get a bit frustrated, I remind myself what chemo felt like, and I think, At least I’m not sitting on the toilet with my head resting on the sink while my body shakes and my nose bleeds and my bones throb. And then I immediately feel better again and able to deal with whatever minor discomfort (in comparison) I’m faced with at present time. So thanks, chemo, for giving me a super unpleasant and unique perspective on what it truly means to feel ill.

Today I was a bit of a grumpypants. The weather where I live has been unbearably hot, which is not ideal when you’re receiving daily burns to your skin and have to travel every day by crowded public transit without air conditioning, back and forth to the hospital. On my way to my treatment today, I sent the following texts to my sister:

Sooooo pissed right now on fucking streetcar fuckkkkkk!!!!
Sweat is pouring down my face and back and I’m going to be late cuz it’s just sitting in traffic.
I want to murder everyone!!!!! Everyoneeeeee!!!!!!

So, yes. You might say the daily grind of going to the hospital is getting to me a tad. I even started to feel a bit sorry for myself today during my treatment and almost cried while I lay on the table, I suppose from the combination of exhaustion and overheating. I thought about how I haven’t had a break from this cancer business in over nine months now and I could feel the anger starting to boil from deep within. But I realized that crying while having a tube in my mouth and a plug on my nose would likely make matters a lot worse, so I chose to stifle my emotions for the time being.

10 more to go. I think I can, I think I can, I think I can.

To give myself a bit of hope and something fun to do, I’ve started collecting several photos of ladies with short hair, in the hopes that eventually my hair will grow long enough to have some sort of actual style vs. the buzz cut look I’m forced to sport right now.

Every time I see a short-haired girl out on the streets, I stare at her and oooh and ahhh. I’ve become a tad obsessed. To the point that I now even feel that people with long hair are a bit boring. I’m not part of their club anymore. I’m part of a new club, full of fierce, bold women who’ve shorn their long tresses in an act of defiance against what society deems to be feminine and pretty. Or, who’ve lost all their hair to cancer and chemo and had no choice in the matter.

Whatever. Almost the same thing.

Here are some of the photos I’ve collected.


I never thought that I would have hair as short as any of these, but now that I am, I am strangely excited about it. I just want it to grow. At lightning speed. Is that too much to ask? I think not.

In conclusion, I want the heat to go away, radiation to end, and my hair to grow. Whaddya know, three wishes. Now all I need is a genie.

Come on, come on, and dance all night
Despite the heat, it’ll be alright

Radiation Update

Dear Diary,

Today I had my first radiation treatment.

I actually wasn’t anxious at all going into it. I think that my family and friends were more nervous about it than I was. Again I am quite astounded at how much I have changed since finding that lump back in September. I am slightly hardened, in a way. Acclimated to all of these treatments, and to the hospital walls. This isn’t necessarily a good thing, because I never want to get used to this as my life. But it does help me face each new challenge. Mentally, I do feel a lot stronger than I did before any of this started. Braver, I guess. None of it by choice, but nonetheless, a new me has certainly emerged out of all this mess.

As I waited for my treatment to begin, I chatted with an elderly man who has a tumor somewhere near his rib. He had had radiation previously, so he shared his experience with me. His doctors are considering chemotherapy as part of his treatment, so he asked how I fared with that. And there we sat, swapping war stories. Me and this 80-something year old man. Another cancer friend. You should know you’re still a very pretty girl, he said. I liked him. I hope he doesn’t have to do chemo.

I had two very nice radiation therapists bring me into my treatment room and set me up, making sure I was nicely lined up with the machine, thanks to my four little chest tattoos. Then they inserted my breathing tube. It was a bit more difficult than the simulation, due to the congestion I still have from my cold. But prior to beginning, one of the therapists remarked that it was quite impressive how long I had held my breath in the sim, so I knew I had to live up to my reputation and not screw it up. And I didn’t. I sailed right through it, and then it was over.

My new best friends for the next couple months. Cream, lotion, ointment, and aloe. Radiation 101.

Honestly, I was smiling through most of my treatment. I don’t even know why. There are lots of bad and scary things that can happen from radiation. Not usually immediate, but further down the line. But I guess I just felt happy to not be in chemo. To not be in pain. And to be kicking the shit out of my cancer, which has clearly become one of my favourite pastimes.

I met up with my sister after. Since she’s a medical student, she is often near the hospitals, which is convenient for me. I got some lunch, then we walked to the health food store, where I got a few items I needed, and some I definitely didn’t but couldn’t resist (chocolate quinoa crunchies, my new fave). And then I went home.

Radiation day complete. One down. Twenty-four more to go.

The main side effect from radiation is supposed to be fatigue. I can see how it would get quite tiring, even without the effects of the actual treatment. Just going to the hospital every day, back and forth, takes a lot out of you. I already don’t really feel like going tomorrow, and I’m just beginning. But I will push through it, and hope it doesn’t get too rough. I don’t want to anticipate anything bad happening. Maybe it will. Maybe it won’t.

For now, I am smiling.

Post-radiation. Feeling my new hair that's slowly growing in. So soft, like a newborn baby. A newborn me.
Post-radiation. Feeling my new hair that’s slowly growing in. So soft, like a newborn baby. A newborn me.

The thunder theory

It’s pouring outside really hard right now and thundering loudly. Whenever it thunders, I think of how my mom used to tell me not to be scared, because it was the sound of my grandfather bowling in heaven. I would fall asleep, listening to the booming thunder, imagining my grandpa getting strike after strike. It is so wonderful to be a child, and believe that anything is possible. To be so easily comforted when you are scared. All you need is to hear a simple tale, a made up story, and the fear goes away, and you are safe again.

Yesterday, I did my radiation simulation. Since the radiation will be near my heart, I had to perform a breathing exercise to see if I could hold my breath long enough to move the heart out of the radiation field. This involved biting onto a plastic tube and having my nose plugged with a clip. While lying in the CT machine, I had to breathe in and hold my breath. The tube locks, and you are no longer able to breathe until it is released, or until you let go of the panic button.

At first I felt a bit claustrophobic and anxious, since I don’t like feeling confined to begin with, let alone with my ability to breathe stifled. But then I started imagining how I must look at that moment which amused me, and then it was over. It turns out I can hold my breath a lot longer than I thought, so I continued my streak as superstar cancer patient.

This isn’t me in the pic, but this is what it looks like

While lying down, the tech also gave me four tiny tattoos so that I can be lined up precisely with each treatment. I had read some people say they found this part painful, so I was a bit apprehensive. But it was nothing and I didn’t even flinch. Between that and my blood test via my port later that day, I had 5 needles, and I realized it didn’t even phase me. Something that used to petrify me is now just part of my normal routine.

Prior to my radiation training, while I was waiting in the reception area, I saw a little girl. Cute as a button, she looked to be around 7 years old. She was clutching her stuffed monkey. Her mom complimented my turban and asked the girl if she liked it, and she nodded bashfully in agreement. Your hair is still hanging on for now, the mom said to her daughter.

Shortly after, she went with her parents into one of the rooms that said “Caution: X-Ray Machines Inside” on the door. Since this was the area where you prepare for radiation treatments, I imagine that’s what she was doing. It didn’t take long before I heard the little girl crying and screaming from down the hall. Her mom left the room for a moment and paced the halls, clearly stressed, while her husband stayed with the girl. She continued to scream at the top of her lungs and I sat there helpless, listening, until my name was called.

My heart really ached for this girl and her parents. How confusing this must all be to a young child. I wish I could tell her a story like the thunder story. Give her some reason as to why this was all happening that makes it fun and makes all the pain go away. But cancer is not thunder. The threat is real. The pain is real. And the fear and confusion that comes with all of it is the same, whether you’re an old man, a 28 year old newlywed, or a 7 year old little girl.

Sometimes there are no magical answers. Sometimes it’s just that life is unfair, and some of us get dealt a really shitty hand, while others may not. I wish there was a better explanation than that, a story you could tell your children when they ask why bad things happen to good people. I wish things could be different.

But for now, I am comforted by the sound of the rain, and happy that I am alive to listen to the scary thunder.

Grandpa just got another strike.

Tree And Storm 2 by George Hodan
Tree And Storm 2 by George Hodan

Surgical tales

As I mentioned in my vlog, I will be having surgery this coming Wednesday. Why am I having surgery? Well, to answer that question, we need to go back in time a bit. Let’s take a walk down memory lane, shall we?

On October 19th, I had a bilateral mastectomy. In non-cancer terms, this means that both of my breasts were removed. Which was about as much fun as it sounds. I realize I never wrote about my surgery, since it happened prior to starting this blog. But it was quite a large piece of the fighting cancer puzzle, as this was when my ugly effing tumor was removed.

The decision to have the mastectomy was ultimately mine to make. Many women opt for a “lumpectomy”, where the tumor is surgically removed but the surrounding breast and tissue remain. Every situation is very different, and often complicated. The period of time spent making this decision was not an easy time in my life. I had just been given this bombshell of a diagnosis, was secretly running back and forth between work and hospital appointments, and had to wrap my head around the idea of losing my breasts, a month after I had celebrated my 28th birthday. To say I was overwhelmed would be an understatement. Looking back, I’m not even sure how I slept, or how I got dressed, or how I got up each day, without completely losing my shit. Every time I would go to the restroom while at work, I would touch my chest and feel the tumor. Yep, still there. It was real. And I wanted it out, as soon as possible.

After some thoughtful deliberation and research, and a bit of soul-searching, I decided I wanted to remove the entire breast on the tumor side. And if I was giving up one, I would send the other one packing as well. Although it was upsetting, I didn’t feel any great attachment to my breasts at that point. They were trying to kill me, after all. And I don’t respond too kindly to anything that threatens my life. So, bye bye boobies it was.

I’m not going to get overly detailed about the intricacies of the actual surgery or the weeks that followed. Waking up from that surgery was not easy. Breasts gone. Giant scars in their place. Surgical drains protruding from my skin. Lots of pain. I spent several days in the hospital, completely loopy and nauseous from the constant flow of pain meds through my veins. I can remember how angry I was that first week. When I was lucid enough to feel any emotion, it was anger. Accepting that I had been diagnosed with cancer was still new to me. And now I had no breasts and couldn’t get to the bathroom without help and couldn’t raise my arms. Nothing about any of it felt alright.

When a young resident came to check on me and we mentioned that the drugs they were giving me did not seem to be helping enough with the pain, she remarked in a condescending tone that it was not normal to be in as much pain as I was in. You might guess that I did not respond well to this type of comment, and you would be correct. I did not appreciate this doctor making me feel guilty for the pain I was feeling. Let me cut your boobs off and see how you like it, I might have said if I’d had any strength to even open my mouth at that point. I wanted to tear her blonde ponytail right off. It has been six months, and I still feel anger towards this woman, this stranger. For making me feel inadequate and weak a day after I had lost part of my body. She was a doctor. And a woman. A bit of compassion would have gone a very long way. Luckily, however, there were many other people who helped me get through it all, such as my husband, who slept on the hospital floor next to me for three nights. Not exactly the getaway we had hoped for as we approached our first wedding anniversary, but at least we were together. Nothing says romance like having your wife high on morphine and hearing screams coming from the rooms down the hall all night.

The weeks after were difficult, with many challenges (oh the irony of not being able to shave or wash my hair while I still actually had hair) but things got much easier as the days went by, and I healed well. Eventually I was raising my arms and getting back my strength and feeling almost normal again. Just in time to start chemo. And we all know how much fun that was!

This week, I go under the knife again for my reconstruction surgery. In other words, I’m getting some new boobs. For the past six months, I have had “expanders”, that were placed under my chest muscles at the same time my breast tissue was removed. Over the months, they were slowly “expanded”, like a balloon, with saline from a giant syringe needle. This was to stretch the skin to make room for the permanent implant. Although I have adjusted to having these weird turtle shells sitting on my chest, they are uncomfortable and tight and push on my ribs, and I won’t be sad to see them go. The implants should be more natural and more comfortable, which would be a welcome relief. (And if you’re wondering if I viewed this as my opportunity to have huge boobs, the answer is… No. Sorry to disappoint.)

I’m not sure how I feel about this upcoming surgery. I don’t really feel scared. I have been through so much. I don’t like the idea of being put to sleep again, and being cut again, and waking up in pain again. I would prefer not to be having surgery again and to get to enjoy the week and just have a break from it all, for a bit. That is what I’d like right now. But these days, I am not calling the shots. So I’ll  get dressed in yet another hideous hospital gown, do what they tell me to do, and let them “reconstruct” me and put me back together. As much as they can, that is. No new breasts will ever be able to replace the ones I lost. All that I’ve lost. But it’s a start.

Today.
Today.

 

Hold on for one more day

This past Friday, I was once again a patron of the chemo ward. As you may or may not recall from previous posts, although I am technically done the chemotherapy part of my treatment, I still need to receive infusions every three weeks for one year. This is because I have an aggressive form of breast cancer, and there is an antibody that was created specifically to target this type of cancer. It has been referred to as “the most important advance in breast cancer therapy in 30 years.” Although it’s a bummer to have over a year of infusions, it’s a small price to pay to help increase the odds that I will be alive and kicking a few years from now. I am very grateful to be receiving this therapy, and to be part of a clinical trial involving another targeted drug. In conclusion, science is awesome.

My treatment this round went fairly smoothly. The only time I started to cry was when I was watching another young woman cry who was having trouble getting her IV started. I hate watching other people in pain. And despite the amazing nurses and staff at the hospital, the chemo ward can still be a fairly unsettling place to spend your time. Sometimes I see people who look as though they are about two steps from death’s door. I often feel like I don’t belong. Did someone make a mistake? Do I really have cancer? It still hits me like a punch in the gut sometimes. I don’t know if I will ever get used to being part of this world. I don’t think I want to get used to it.

I have been having some pretty severe muscle pains and stomach issues. But compared to how I usually feel right now during my chemo cycles, my energy is definitely about a million times better, as is my state of mind, so I’m very hopeful that the next year will not be as rough as the past several months have been. I am really praying that the worst is behind me.

Last week, my blog and I were featured on the website She Does The City. I am always very flattered every time someone contacts me asking if they can publish one of my posts or have me write something for them. When I first started this blog, I had no idea that it would spread the way it has or that it would actually create any type of impact. I have had many people write to me, telling me that I have helped them feel less alone while they are dealing with a cancer diagnosis, and these types of messages help give some sort of meaning to this absurd journey I have been on. Considering how isolated I have been, I have made so many connections with all sorts of people. Writing and having people urging me to write has truly been one of the only upshots of this experience. Something providing me with a purpose. So I suppose I should thank the internet, and modern day communication. And thank everyone who reads and reaches out to me and tells me I am doing something helpful during a very scary and very challenging time in my life.

Today I declared that I felt strong enough for some “cancer dancing” and danced around to  various cheesy songs until I felt that my limbs were about to fall off. I was bouncing around for about fifteen minutes, which is fifteen minutes longer than I could stand a few weeks ago. And I didn’t fall down, despite the pain in my legs. An insignificant event for most. A major accomplishment for little ol’ me.


That’s my sister with me in the video. What’s the point in embarrassing yourself if you can’t take someone else down with you? Also, the scarf on my head was forgotten by a friend at my house one night, accidentally. Moral of the story: if you leave something in my home, it will most likely end up on my head.

Ringing the bell

I’m happy that I made so many of you happy with my last post. Tomorrow is chemo #6, so since I will probably start depressing the hell out of you by this time next week, I figured I would check in again while the going is mostly good.

I am currently chomping on some crackers to take with my pre-chemo dose of steroids. I will be on a lower dose this round, which hopefully will minimize some psychotic feelings and fat face and other issues, while still doing its job of mitigating serious reactions to the chemotherapy. I have learned that most of cancer treatment is trying to find a middle ground between making sure your treatment is doing its job and making sure you aren’t completely miserable and in constant agony. That sweet spot is a very difficult one to find, indeed.

I am still feeling pretty decent, all things considered. I have developed some uncomfortable muscle pain the past couple days, which I imagine is a delayed reaction to the cumulative chemo sessions. I also have constant runny eyes which can make it difficult to see, and a constant drippy nose, which can make it difficult not to be gross. Some side effects can show up after completing chemo (something fun to look forward to!) and last for quite awhile. It is difficult to deal with the toll all of this has taken on my body. A lot of people don’t realize the severe effects cancer treatment has on your physical well-being, long after the treatment is over. I worry sometimes about long-term muscle pain, joint pain, exhaustion, fogginess. I worry that people won’t understand and will expect me just to be like any other normal young gal. But I will never be normal. Nothing about this is normal. I guess I will just have to deal with it, same as I have been with everything else. And hope that I will find nice people to carry me up a flight of stairs when my legs start to ache as they do now.

So tomorrow is my final chemo. I made it through to the end of this grueling part of my aggressive treatment plan. At my hospital, when one finishes their chemo treatments, there is a bell you’re supposed to ring and people clap and whatnot. I’ve been a bit torn about ringing the bell. In three weeks, I will be right back in the chemo chair, because I need to continue to receive targeted antibody drugs for an entire year, due to my badass type of cancer. There are still side effects, but they should not be nearly as severe. I have already started on those drugs, but since they’re currently mixed in with my chemo cocktail, it’s difficult to know which side effect is a result of which drug. Hopefully, it will be a breeze compared to what I’ve been dealing with. But the fact that I will still be hooked up to bags of drugs every three weeks for a year makes me feel a bit reluctant to ring the bell.

However, after some deliberation, I have decided I am going to ring that goddamn bell. I have had to sit in that chair many times, with cytotoxic liquid dripping into my veins, hearing the bell ring and feeling envious of the person ringing it. That lucky bastard. So, now it’s my turn. I’ve earned it. And around this time next year, I will ring it again. Harder. In all likelihood, I will probably break it. Poor bell. You have no idea what’s coming your way.

Needing this pep talk to get me through tomorrow. Thanks, Coach Taylor. I can always count on you.