Guest blog by Ian Ricci
Home – 6:30am:
“I can’t read,” Anna said. I had just woken up and was a little confused. “What do you mean you can’t read?” She repeated herself, this time with a little more fear in her voice. “I just can’t read”. Given the tone I knew this wasn’t a joke. She was trying to read the instructions for our daughter’s cast removal at the hospital.
Toronto General Emergency Room Triage – 11:00am:
After taking our daughter to get her cast removed and dropping her off at daycare, we headed to downtown to the Emergency Department. At the ER Triage we explained Anna’s metastatic diagnosis and proudly highlighted her most recent clear CT scans. Anna explained her inability to read, which had been happening on and off all morning. At this point she seemed to be doing well, and I was wondering if we were overreacting.
When a cancer crisis happens Anna reaches out to her metastatic network online. Given her inability to read and type, this became my job. When I told her that her close friend Julie sent her love, Anna looked confused and said “Who?”
“You know your friend Julie from Rimouski” I replied. Anna looked back at me crying, her anxiety was now fear. The triage nurse quickly realized it was serious. She grabbed Anna’s hand and reassured her that they were going to take good care of her. Then she quickly ushered us to the doctor.
Emergency Room – 11:15am:
The doctor asked Anna questions to evaluate her cognitive abilities and get a sense of her medical history. A head CT scan was done to rule out a variety of potential causes.
Emergency Room Waiting Area – 12:30pm:
After the CT we were put in a secondary waiting room. We camped out there for a while waiting for the results. After not hearing anything for some time, I approached the doctor. She told me she was going to look at the CT results next and let us know the results right away. From my spot in the waiting room I could see the computer at the nurses station which had an image of a brain scan. After a few minutes and a couple of additional reviewers, the doctor shifted to another station and started making phone calls and emails. The image of the brain stayed on the visible computer screen for a good 30 minutes. The doctor saw three more patients, checking the computer after each one.
Emergency Exam Room – 1:30pm:
We were called into an exam room. The doctor compassionately told us the CT scan showed a 3cm tumour. Anna’s breast cancer had spread to her brain. This has always been one of her biggest fears. We were both in shock. Admittedly we were getting used to Anna feeling like she didn’t have cancer and then… BAM… it comes back. The ER doctor lets us know that our oncologist had been working in the background arranging appointments. First stop was to an affiliate hospital for a more detailed MRI. We grabbed some food on our way. Anna wanted a burger. She sat with a friend who had been with us when we had got the news. I went to an area where Anna couldn’t see me. I order her burger and I started to cry. No noise, just tears. After a few minutes, I took a deep breath, cleaned myself up and went back to the table with Anna’s burger.
Toronto Western MRI clinic – 3:00pm:
We check in at the front desk. We wait. After a couple hours Anna still hasn’t had an MRI. We are told by an incredibly gentle Radiologist, that we have to head down to the Emergency Department and speak with the Neurosurgeon Resident.
Emergency Triage 5:30pm:
Anna is asked to re-explain her symptoms and essentially do the same thing she had just done in the last hospital emergency triage. I am starting to get very annoyed and frustrated. Maybe this is because of the wait and delay, or because I just found out Anna’s cancer has returned and I feel powerless.
Emergency Department – 6:30pm:
Anna is given a bed in a curtained off area. We wait. After a number of inquiries with the nurses, I was told that neurosurgery is busy and someone would be with us as soon as possible.
At 9:00pm we have our first visit from a resident. He apologized for the delay but the Neurosurgeon on call was tied up in an emergency surgery and still needed to review our file. He explained that the delay in getting an MRI was because they needed to decide the type of MRI Anna needed. One is general the other is a detailed scan that they use as a tool in surgery. Given she had the CT scan and we clearly knew where and what was going on, it was likely she would be getting the surgery version. We were told that the MRI machine was booked solid and it would be a couple more hours before the resident would be able to update us again.
Emergency Department – 12:00am:
The Resident came back for an update. Anna’s MRI was scheduled at 5:00am. At 9:00am her oncologist had set up an appointment at the Princess Margret (PMH) Brain Mets Clinic. The Resident let us know that Anna would be admitted to the hospital when there was a free room. Until then she would be camped out in the Emergency Department.
Home – 1:00am:
I spend an hour trying to organize for a few days at the hospital. Lots running through my head and all the pieces that need to come together for the next while. That evening I had some amazing people supporting me, offering to do whatever it took to get through this. I just didn’t know what we would need. All I knew for sure was that the kids needed to be at daycare by 7:00am and I needed to be at the hospital by 7:45 to get Anna to the Brain Mets clinic at PMH. Everything was up in the air and I wasn’t even sure she would be able to go to that appointment. It’s hard to plan for the unknown. In addition, I had to cancel tickets we had purchased for a last minute family cruise to celebrate Anna’s 38th birthday and her clear scans. We were supposed to leave in a week. That night I got about two and a half hours sleep.
At 5:30am I had a shower, a coffee, and woke up the kids to drive them to daycare. At 6:45 I sat in the daycare parking lot waiting for it to open. Most days I am lucky to get them there before 8:00am.
ER department – 7:45am:
When I pulled back the curtain around Anna’s bed I was a surprised to find she had oversized cheerio shaped stickers stuck to her head from the MRI. It almost looked like the pre make-up layer before they add the prosthesis to transform you into a Star Trek character. The resident stopped in and told us we had a day pass to go to the PMH Brain Mets Clinic.
PMH Brain Mets Clinic – 9:00am:
The Senior Resident went through Anna’s symptoms and did some testing. She summarized the procedure, what the risks were, and what was going to happen next from a timing perspective. Anna was going to have the metastasis removed surgically (craniotomy). It was about 3.5cm in diameter and close to the skull.
Next we met with the staff neurosurgeon. He let us know Anna will likely have surgery in the next 48 hours. For some reason, I ask if he would be able to do the surgery on Monday. I’m still not sure why I was so insistent about this. I think, everything had been happening so fast and I really wanted the kids to see Anna before any surgery. I had so many worries. Would she live through it? Will she come out looking/acting different?
If you have children and you or your spouse have metastatic cancer, children drive a lot of your anxiety. Like all things, you have a natural instinct to protect your children from all physical and emotional harm. I think I told the surgeon that I thought it was important the kids got to spend time with their mom before any surgery. He listened and told me he was going to speak with the surgeon who had admitted Anna. We asked to see the MRI. The surgeon walked us through the location, size, and composition of the tumour. We head back to Toronto Western to wait.
Toronto Western Emergency Room – 10:30am:
I organized the next 48 hours with the help of some friends. Someone was coming to stay with the kids for the weekend and meals were being planned. We had been through this cancer stuff before and friends were ready to help. We had lunch and I headed home to get organized, prepare another bag for the next 48 hours and bring the kids to the hospital to visit Anna.
At 3:00pm I brought the kids to spent the next hour with Anna in her ER cubical. They sat with her, wearing fake moustaches, brought by Anna’s close friend who had come as well. It felt normal, aside from being in the emergency room.
Hospital Ward Room – 4:00pm:
Anna was moved to a ward room while I shuttled the kids and Anna’s friend home. Another close friend of Anna’s popped in for a couple hours. We all chatted, ate some Vietnamese food. I made some phone calls to family and sent some emails keeping everyone in the loop.
AT 8:00pm Anna’s surgeon came to her room to discuss the surgery with her. She outlined the risks in percentages, all very small. The largest was 5%, I have little recollection of what it was related to. As far as I was concerned there were no alternatives other than to remove the golf ball sized metastasis from her brain. She recommended that we do the surgery on Saturday. I have to say, this woman was incredible. She was direct, honest, and gentle. Her bedside manner gave both Anna and I the confidence we needed to face the procedure. It also helped, that I had asked around and was told that she was the best.
At 9:00pm Anna began to fall asleep after taking a sleeping pill. I was worried about her, I could tell she was anxious and scared. We chatted a little bit about not being able to go on vacation. How ironic that we booked a vacation for her birthday to celebrate being clear for almost one year, only to have to cancel because she has a brain met.
Home – 6:30am:
I didn’t sleep well and was anxious to get back to the hospital. I was worried that Anna would be carted off in the middle of the night or while I slept in, or would be alone in a strange hospital room.
Hospital Ward Room- 7:00am:
Anna was awake and had been for quite some time. We both knew what was coming. We ended up watching a movie, chatting about the kids, what may or may not happen after surgery. At 9:30am the residents made their rounds and told us she would have surgery around 11:00am. We didn’t talk much after that. All we could do was process what was about to happen. Anna was scared and so was I. Every fear, anxious thought and regret was creeping into my head.
Pre-op Room – 11:00am:
The room is dimly lit and Anna is the only patient. There is a couple of neurosurgical residents chatting quietly in a work area in front of us. Anna’s surgeon arrives in her street clothes and tells us they are waiting to see if an emergency surgery would bump Anna later in the afternoon. An hour or so goes by. We sit quietly waiting. I think I washed and sanitized my hands two hundred times. I couldn’t sit still and you could hear a pin drop. The anesthesiologist arrived and the mood changed. She had lots of energy and was loud. Anna immediately loved her. She walked Anna through the procedure from her side of things asked some more questions about how Anna felt from the general anesthesia in previous surgeries.
Waiting – 1:00pm:
Anna went in to surgery. I left to grab some lunch with a friend. We chatted like we normally do about normal things. It was good. I was thankful he was there.
At 2:30pm we get back to the hospital waiting area. Everyone in this room is waiting for someone to get out of surgery. I felt like there were too many people in the room for a Saturday. Some more friends of ours show up. One friend brought some slippers for Anna. Anna had lost a slipper the day before, and my friend had ran out looking for a new set of slipper’s I knew Anna would love. In addition to the slippers, she also brought me a cold pressed green juice. Probably more nutrition in this bottle of juice than I had consumed in the last few days. We wait.
At 5:00pm Anna’s surgeon comes out and gives me the news. Anna’s surgery went well. They were able to remove all of the tumour and the attached cyst. I was really happy, but hesitated to express my feelings. I really wanted to see her. I was told that I had to wait about an hour before I would be able to go into the ICU.
ICU – 6:00pm:
The waiting room is right outside the ICU. In order to enter the ICU you need to buzz in with the camera phone. The technology didn’t work that well and sometimes you end up waiting a while for someone to answer. I asked my friend if he wanted to leave, but I got the feeling he wasn’t going anywhere until he knew that I was in with Anna and okay. I grab the slippers and navigated my way to her room. I wish I could remember who and what was said first. I was just glad that Anna was alert and speaking. I present the new slippers, she was excited. She told me they had found her missing slipper and gave it to her when she got out of surgery. Cinderella now has two pairs of slippers. I left the room to tell my friend that Anna was okay and his shift was over. I have incredible friends.
I returned to Anna’s ICU room. I arrange all the bags I have packed for the night. I had gotten used to packing for uncertain lengths of time. Anna insisted that I didn’t stop talking. She didn’t really care what I said, just that she could hear my voice. As I learned later, she was extremely anxious that when she woke up, she might not be herself. I think hearing my voice and understanding my words confirmed to her that she was okay. I talked for about three hours straight, easier said than done.
At 8:30pm a good friend of Anna’s came for a visit. She brought a book and was going to read to her while I went out for dinner. I walked down Dundas to a popular Italian Restaurant. The place was jammed, but there was one seat at the bar behind the draft taps where the hostess was working. Strangely, sitting alone in a busy restaurant after going through a crazy 60 hours was exactly what I needed. Everyone in the restaurant seemed happy. I sort of wondered if they knew how great they had it. Living in the moment and feasting on the time we have with loved ones, family and friends is so incredibly important. You never know when it will change or end.
At 9:45pm I made my way back to Anna’s room. Anna had actually ended up chatting her friends ear off which was she needed and wanted. Her friend headed home. I began the talking shift. At some point Anna fell asleep. I tried to get comfortable and sleep. There was no cot just a straight back chair. I tried sleeping using the different pieces of furniture in the room. The floor seemed to be the most comfortable. How much sleep I got and how comfortable I was really didn’t matter. I was just glad Anna was on the other side of another difficult cancer experience. I was thankful for the medical expertise and individuals that navigated Anna to safety. I was thankful for our incredible friends and family.
Categories: guest blog- IAN