If you haven’t already guessed from the title of the blog post – I had the full hysterectomy. It wasn’t fun. We were at the hospital by 8:00am for an 11:00am surgery, however they were running behind and I wasn’t brought in till 1:30pm. I had to bowel prep the day before so I was starving and weak, not to mention the added stress just from stirring in a waiting room for hours on end. I woke up from the surgery in an extreme amount of pain. I couldn’t think or function, all I could focus on was the pain.

I found out that they wanted to send me home, that this surgery was considered a day surgery. Thankfully the nurse in charge in recovery could see my pain and ordered that I spend the night. So at 10:00pm I was finally wheeled up to my room.

That night was long. I was slightly drugged up, but not enough that it took away the pain. They didn’t bring me a commode so when I woke up to pee, I didn’t know what to do. The nurse that night also was pushy. It was as if the whole hospital was against me and didn’t believe my pain. They were treating me as if I just had a cavity filled and that I should be fine.

I should mention this surgery was not done at my regular hospital. There the whole staff knows me. They know that my pain tolerance is high, and that I am always pushing myself. So they would know that if I was complaining I can’t do something, I must be in a lot of pain.

Anyways, so the night nurse told me I had to walk to the washroom. She made me try and stand and walk on my own. I was able to take one baby step and then felt faint from the pressure and the pain. Reluctantly she got me a walker and told me to use that then. When I got to the bathroom the toilet felt like it was on the floor. Trying to sit so far down was difficult and again I was not offered any help. Once I was on the hard and low surface, she said to pull the help cord when I was done.

I couldn’t push out the pee because of the pain, so I had to sit and let it slowly dribble out naturally. I felt worse and worse every second sitting there. When I was finally done I pulled the cord. It felt like it took her 10 minutes to get back to me, and I thought I was going to fall over on the floor I was so weak. On the way back to my bed I was now in so much pain I thought I was going to be sick. Once I finally made it to bed, I told her I WAS NOT doing that again. If I had to pee anymore that night I had to have a commode chair. She finally fucking listened.

The residents working with my surgeon were not better. They were trying to push me out of the hospital and kept telling me that I shouldn’t be there anymore. Honestly it was a terrible 3 days. I don’t even feel like typing it all out because it was so frustrating. I didn’t even pay for the tv because I knew I wanted the hell out of there, but how can I leave when I can’t even walk!? Fucking idiots.

My surgeon actually ended up being uber nice. In my post OP I told her about the terrible way her residents spoke to me. If it’s a teaching hospital, then they need to be taught proper bedside manner.

What was discovered from the surgery was that it wasn’t just the right ovary that had cancer. Both ovaries and Fallopian tubes ended up all testing positive for cancer. The feeling of relief you think I would feel knowing that it was all gone was actually replaced with worry. First off, how did the other tumour on the other ovary miss all of the scans I had? And second, it it just really heart breaking knowing how riddled I was with cancer down there. Nothing is easy being stage 4.

So now I’m in full blown menopause. Hot flashes, mood swings, it’s all super fun. I feel like a shell of my old self. That I am just going through the motions of day to day but I am just not all there. My anxiety has increased 10 fold. It is also really weird thinking about how I just have this open cavity now “down there”. That all of those organs are just gone. I didn’t expect to feel so much sadness over that. It is just a weird thought.

My therapist said it is time for me to see a psychiatrist. That my anxiety has become so bad that I should probably consider taking medication for it. She also said I should probably make an appointment with an endocrinologist. But I will leave all of my frustrations around that for my next post ✌️

She’s In A Meeting

Doctors appointments are never fun. There is always a build up to them. Always pent up anxiety associated with them.

Yesterday I had another ultrasound scheduled, and then an appointment to see my gynaecological surgeon an hour later. Back in April we discussed that she wanted a few more chemos, and then another scan and ultrasound before she would make her decision on whether or not I should have surgery. So for the past three months that is really all I have thought about. If given the choice, do I just remove the one ovary, or go for the full hysterectomy? What if there is no surgery, how do I feel about that? These questions and many more have just spun around in my head over and over again.

So when we found out that Raptors parade was scheduled to be the same day as these two appointments, we were less than thrilled. Changing these was not an option for me. Coordinating one would have been a challenge, but two? Nearly impossible. I did not want to wait a day longer to find out what the rest of my year will look like. So we suffered through the crowd and chaos and made it to the first hospital on time.

Another probe up the vag. Another uncomfortable dark room. But it was all over in 40 minutes. On to the next hospital.

I had a CT last week, which was also a challenge. In April. She specifically said she wanted a CT before this meeting. Another hard thing to coordinate. It was phone calls back and forth, appointments that needed to be canceled and changed, because CTs do not book easily. Having a deadline for them is extremely hard, especially when every other week I am too sick to go. And she also wanted me to have a few chemos under my belt before the scan. So the window for this scan was really just a certain week. Try explaining that to the booking department. Boy they just loved me. Yet, somehow I pulled it off. Like I said, nothing was going to stop me from getting the answers I needed.

My appointment was at 3:15pm, however every time I have seen her in the past it was always at least an hour late. So when we were called in at 3:12pm, I was pleasantly surprised.

In came the first nurse as expected. They usually ask some questions and make small chit chat to buy some time while you wait some more.

After 2 minutes of small talk she says, “So, she is in a meeting right now and won’t actually be seeing you today.”

A meeting? A fucking meeting? Do doctors not understand the mental shit we go through leading up to these fucking appointments. We battle and struggle everyday to keep ourselves together because the anxiety building up in our bodies is suffocating. And she’s in a fucking meeting. Is she in a meeting about how to save the planet? Or how to cure cancer? I would like to know what this meeting is about, because it better be a good meeting. It better be worth not showing up to my appointment.

All of that stress and anxiety not only about these appointments, but also about having to some how navigate through Toronto with over 2 million people there for that stupid parade. For nothing. No answers. She’s in a meeting, and she will call me sometime this week.

Fucking awesome.

A Stranger’s Struggles

Yesterday while driving I started thinking about my numerical age and my mental age. When I was diagnosed at 27, I turned 28/98 two weeks later. It took some time throughout the grieving process for me to really shed all off a lot of my bad personality traits. Although some of them still exist, I would say I am much more enlightened then most people. I live each day knowing that tomorrow may not exist. I think about this everyday while most may only think about it once a year. I try to not sweat the small stuff and be mindful that the person next to me in line may be struggling too. They don’t know they are standing next to a dying girl, and maybe they are dying as well, or have something else tragic going on in their lives.

I then drifted off to how sad it is that my life will be cut short.

Then my mind went to how terrible it is that I am sure many people still gossip about dumb stuff that bother them about me – all the while knowing that I am dying. When you have cancer, does that make you exempt from the catty gossip? Probably not but it really should.

As this was all going on in the span of 5 minutes in my head. Then I turned right. As I did a man waiting to turn left yelled at the top of his lungs,

“Is your turn signal broken you stupid bitch!!”

Thank you for proving my point sir. Also, thank you for recognizing I am a female just with a buzz cut.

Five Years

When you hear about the “5 year mark” in regards to cancer patients, they are usually talking about remission. Some count it from their last chemo date, some from their last scan, but either way the 5 year mark is a big deal. When you have been cancer free for 5 years they say you are now in full remission. You officially have less of a chance of the cancer ever coming back.

Today is my 5 year anniversary, but for stage 4 patients like myself, mine is about my diagnosis date.

Yes, today 5 years ago, my entire life changed. Just typing that out is making me cry right now. It is hard to see it in words, but it could not be more true. Everything I thought I knew and everything I thought would happen changed on this day 5 years ago. I am still grieving the life I never had.

Today is also significant in a positive way as well. I’ve made it to 5 years. That is a long time to be alive with stage 4 cancer. I have lost some friends to it along the way, because the fight it extremely hard. You can be fine one day, and then the next you’re bed ridden. It is a terrible and taxing disease. So the fact I have lived for 5 years with it is remarkable. It is also terrifying and deeply saddens me.

How much longer do I even have now? And how the fuck have I been living in this hell for 5 years? Today is full of “why me”.

I can’t even write this blog post any more. I feel like I need to live this day out, and then reflect on it later.

What I will quickly say though, is the other day I ran into someone I had not seen in 5 years. This person does not have social media, and we do not share any mutual friends. He was an old coworker. He was catching up with two of friends of mine while we were out to dinner, then he reached across the table and introduced himself to me. I was humiliated. I froze and didn’t know what to do. My friend chimed in and said “That’s Jamie”. He got all awkward and quickly left the table. I cried.

That is kind of the theme of this week. Which is why yesterday I not only bought myself that Gucci purse, I bought another scarf as well. Can’t take my money with me when I die, right?

Monetary Happiness

This vacation needs to come faster.

I leave for the British Virgin Islands soon. Chris and I along with some family and friends will spend a week on a private yacht – and just cruise around and enjoy our surroundings. It will be one of the most glorious trips I have ever, and will ever go on.

And I need it – desperately. Yesterday I had an ultrasound on my ovaries. My new surgeon needed to take a better look at the tumour in order to decide whether to operate or not. Laying there in a darken room on the table, as the tech pressed hard over my right ovary in order to get a better photo – I began to cry. Not only did it hurt, but it was another hospital room where I was just staring up at the ceiling – wondering how I got here. In these moments I feel very alone. No one else will experience this with me. No one else will understand the pain and discomfort I was in. No one else can experience all of the flashes of different rooms that quickly run through my mind while I lay there.

The internal examine was even more of a trigger. Now I’m laying there experiencing all of the same mental triggers, but I’m also trying to deal with even more pain and discomfort as she probes my inside trying to get even better photos of this massive tumour. It was terrible.

After she was done, she needed to have a doctor sign off that there were enough shots, so I was left alone. For 20 minutes I laid there, with a thin sheet covering my naked lower half, in a darkened room, staring up at the ceiling just slowly crying. It was the type of tears that you can feel drop by drop start to well up in your eyes, and then you can sense when the last one will spill over and run down your cheek. I call these type of tears my “lonely tears”. I shed them when I’m alone, in a more public place, and I’m trying ever so hard not to have a full meltdown. So I breathe heavy out through my mouth and try to calm down so no one around me can tell.

What’s hilarious about all of this was the fact that on my Instagram, I was posting about if I should purchase a new Gucci bag. So everyone just thinks I’m out having a grand old time shopping and spending all of my money. Maybe some of them thought how stupid I am to want to spend $1500 on a purse. Maybe some of them just sat there and judged away – not knowing why I needed that pick me up. Is it realistic to spend a mortgage payment on a Gucci purse? No, of course not. However in these moments I don’t give a fuck what is “realistic” and I just want something that can help take away the pain that exists in my mind. If buying that purse gives me even 5 minutes of pure joy – then it is worth it to me. If when I wear it people focus more on how beautiful it is than how many white heads are on my chest and neck – then it’s worth it. If when I put it on I smile and feel confident in my outfit that day – then it’s worth it. Yes, these monetary things give me joy and I am not ashamed of that. I’ll do and spend anything to find these little moments of happiness in this shitty life I am forced to live.

Chemotherapy Side Effect

I’ve done the loss of hair thing twice before. The first time it sucked (as I’m sure you read about), and the second time I didn’t really care as much. This time it almost hurt worse than the first time. I think it is because now I know what to expect. I had finally got my hair to a length and a cut that I was happy with. I was feeling super confident in my appearance again. At the beginning of summer I joked with Chris about now that I was looking good and healthy that I didn’t need him anymore lol. So it was really hard to go from that to this. It takes FOREVER for hair to growth back, and there are what feels like 100 stages of awkwardness along the way. When it’s too short to have a style but too long to look shaved. When the hair on top is starting to get longer so now you have an awkward mushroom top. When the side burns are starting to grow in and you look like an animal. When the sides are coming in and just grow straight out and look ridiculous. I was not welcoming all of this again.

But it was inevitable. I tried at first to make it all stay but it was falling out so fast. I wouldn’t wash it for a week to try and prevent pulling it out and making it worse. Finally on Christmas Eve I was at my hairdressers and she washed it and it just became a huge rats nest. It was not going to comb out. We had no choice but to shave it right then and there. I cried. She cried. Chris cried. It sucked.

To top it all off, I’m on a new drug called cetuximab. It’s number one side effect is an acne like rash. My doctor warned me that everyone gets the rash, but some people get it worse. Yes, you guessed it right, I got it worse. It started as just a small patch on my cheek and slowly took over my whole face, scalp, chest and back. Some days every pore has a white head. It hurts as if it is a bad sun burn. It is itchy and hot. After the Christmas break when I came back for treatment my oncologist took one look at my and his mouth fell open. He assured me in his own way that yes, this is a bad rash, however there is a theory that the worse your rash the better it is working.

My scan in February proved that theory. All of the liver tumours have shrunk, and the one on my bile duct causing me all of those problems has actually just disappeared. WTF. The big boy on my ovary is being a little more stubborn and only shrunk 1.5 centimetres. So they are considering surgery to just remove it completely (I’ll find out what the plan is in April hopefully).

Without my hair and this big rash, my self esteem has plummeted. I went from feeling the best I have ever felt in the summer, to feeling the worst by the winter. You would think I should be used to the rollercoaster that is my life now, but I’m not. I avoid seeing most people because I am embarrassed. Cetuximab’s other fun side effect is hair growth. So now my head hair is growing back – which is great. My eyelashes are coming in so thick and curly it is actually becoming annoying. But the rest of my facial hair is also growing now. I am getting a moustache and chin hair. I have abnormal amounts of hair growth on my cheeks and forehead. The other day I actually had to pluck hair on the tip of my nose and just under my eyes.

After losing all of that weight, every doctor and nurse just begged me to eat whatever I wanted in order to get it all back on. I think my oncologist is at his happiest when his patients are becoming plump instead of skinny. Yes, more weight does make the chemo a tad more tolerable. However all my weight seems to be coming back just on my stomach. I haven’t had a flat stomach since my first surgery. My muscles never joined back up after being cut down three times, and with all that scar tissue underneath there, it sticks out a bit. Now for some reason it is all just going to my waist. As if the universe just wants to fuck with me a little more. My nutritionist had a very blunt conversation with me about all of this. She let me know that with everything I have been through, and the amount of drugs I am on now, I shouldn’t set these high expectations of myself anymore. She said that maybe that’s just how it is going to come back on, and I need to suck it up and get used to it. My body is not the same as it once was so I should stop expecting it to be. This is all easier said than done.

Ok, let’s all take a gander at how bad I look now ✌️

Back On Chemo

As my body was fighting off the pancreatitis, I was going to CT scans so they could make sure everything was going smoothly. Somehow from talking with one of the many people looking after me, it came up that the tumour on my ovary has grown a whole centimetre in the week I was there. I became scared. The longer my body is weak and not on chemo, the bigger this beast is going to get. It was at the level where it began causing me pain, and I was having trouble getting up and walking.

So when I let me palliative care nurse know that I think I would like to be discharged on Friday, she was concerned. She knew the pain I was in, she also knew I do not like pain meds and would not be taking any with me at home. Every day when she visited she raised her concerns with me but I was adamant I wanted to leave. The deciding factor was my conversation bedside with Dr. Jay. I said to him quite frankly, “I feel like I am going to be in pain for a while, so why not be in pain at home than in this bed.” He agreed. He let me know that the life I was given between surgeries when I felt “normal” was probably over and I would be heading into a different chapter with more pain and more drugs. Awesome, so get me out of this hospital.

I called up to my oncologist and asked him if I could start chemo on the following Wednesday since my liver stats were back to normal. He scheduled me in. Those five days at home leading up to chemo were terrible. I had a massive migraine, I still was barely eating and I was in pain. But I was hopeful the chemo would begin to shrink the one tumour causing most of my problems and that the pain would subside.

Just all around a bad decision. Chemo did nothing but set me back ten steps. My body was too weak to handle the drugs and I became more sick than I ever had been before. I would just sit on the couch, in the basement in the dark, staring blankly. Chris would have to pick up a water glass and put it to my mouth to try and get me to drink. I threw up everything that went in. In the night I would call out his name so he could help me up from the couch because the pain was becoming worse. When Monday came we called the oncology unit and the nurse told me to get right back in. They hooked me up with fluids and nausea meds through IV, and set me up with home-care so I could receive this at home as well. The following Wednesday I was right back at the hospital for another round of chemo. I was determined to fight through the sickness if it meant shrinking this tumour. Again, terrible decision. I was down more weight and my body just could not take it anymore. I couldn’t keep anything down. One bite of toast would come right back up seconds after it went down. I was becoming skin and bones. We made the decision to give me all of December off and restart chemo in January. I was told to eat whatever I wanted, whenever I wanted. They just wanted that weight back on. So that is what I did. We celebrated small victories of me having two bites of toast and not throwing it up.

Come January I had the idea to reduce my chemo drugs to the lowest they could go, and work my way up from there. My oncologist is amazing and will always try and appease me when he can, so we tried it. My first dose after being off for a month was only at 40% strength. I handled that well so two weeks later we bumped up to 55%, and then 65% after that. My scan in mid February would determine if any of this was working.

Ok I think I will stop there for now. Here are some more photos of me wasting away lol.