It’s Been Awhile

Geeze. I knew I was slacking on the blog posts, but not blogging since September? My bad.

I have a good excuse though, don’t worry.

This blog post is going to be a long one because we have a lot of catching up to do. So go brew some tea and come on back.

The Fall went by for me in the blink of an eye. After my meeting at Sunnybrook with Dr. Law, I was then sent a referral to meet with Dr. Ian McGilvary over at Princess Margaret. He is a renowned liver transplant surgeon who is used to performing very complicated surgeries involving the liver and the ducts and arteries surrounding. So our meeting went well I guess, we discussed surgery and the complications surrounding it. Even though I have had three major liver surgeries in the past, he let me know this one would be the biggest and the most complex. It involved removing another section of my liver as well as my bile duct and artery, and then reconstructing them using a vein from the leg and a part of my intestine. So I began mentally processing all of this and was on board with the surgery even though I was terribly scared. However, like all things in my life, it wasn’t going to be that easy. I had to go have a PET scan in order to firm up the exact placement of these liver mets. Sure enough, the PET scan found something. Which is CRAZY because I just had one only two months prior. An eight centimeter tumour was discovered on my right ovary. Surgery was cancelled yet again and chemo was now indefinite. Awesome.

Now, let’s rewind a bit here. Just before my PET scan in October I started to feel off. Couldn’t really nail it down but I wasn’t feeling like myself. I chumed it up to the stress of everything going on and just figured it would go away. My PET scan was performed at Princess Margaret and this is only important information because every hospital seems to have different ways of performing the same scan. So I drank the toxic chemicals, sat for an hour waiting for them to get all up inside of me, and then had my scan. The next day I woke up and went to the washroom as per usual, but noticed my urine was a stark yellow colour. I thought maybe this was me peeing out the chemicals and that it would go away. I drank lots of water and throughout the day it didn’t change, it also was thicker than regular urine. Which don’t ask me how I know that. I can’t explain the feeling but trust me you can just tell. So a few days pass and I mention it to Chris, who is positive that I must just be dehydrated. So I did a test. I drank glass upon glass of water that morning. When I used to track the PH levels in my urine I became quite familiar with how my body and pee change colour when I drink a lot of water, so I knew what to expect. Sure enough after copious amounts of water, no colour change. It was still brighter than anything I’ve seen before.

One quick Google search to “extreme yellow urine” brought up the idea that it could be bilirubin – which is what your bile duct in your liver filters out. Uh oh. So to my family doctor we went. A blood and urine test was done and we waited on the results which she said would take a few days. Well during those days I became much worse. I couldn’t eat, was nauseous and throwing up. Something was wrong. So we went to my local hospital emergency room to find out what the hell was going on. Seven hours later, they said yes there was bilirubin in my blood and urine, but because of my many surgeries they didn’t want to do anything further with me. They let me know I should call my doctors at my main hospital to fill them in. Great, thanks for wasting my time. Oh and this was on a Friday might I add, so I would have to go the weekend without any help or answers. As the days went on I was feeling worse and worse. It was hard to even keep liquids down. Finally Monday came and I called Dr. Jayaraman’s office first thing and let them know what was going on. They called me back an hour later letting me know I would most likely need a stent put in my bile duct, because the tumour attached to it was probably compressing it closed. That Thursday I was back at the Ajax hospital for my stent procedure, and Friday I actually felt better. We ended up having to go to Toronto that day to meet with Dr. McGilvary which is where he told me about my ovary tumour. By the way, when bilirubin is in your blood and urine it is called being jaundice. I was definitely yellow due to the die in my blood and looked like a Simpson character.

Phew, now that part is all caught up. So now we are in late October. I was told I would be going back on chemo and he was happy that I found relief with the stent. The next day everything got worse. I couldn’t eat or drink, I was nauseous and throwing up. Something was wrong again. By Tuesday night my body just couldn’t take it anymore. Chris was frustrated seeing me this way and he said I need to decide if I want to go back to the hospital. I think he was shocked when I said I did, because he asked me the question like 5 more times. I told him I wanted to go to St. Josephs emergency this time. They have all my records and I won’t be there for 7 hours and then just sent home. Driving down I told him that I was sure they were going to keep me for the night. Sure enough, they took one look at me and my terribly yellow complexion, and rolled out the red carpet straight to a bed in emerg. After a CT scan I was told my stent had also collapsed and I would need a metal one put it. They scheduled this for Thursday afternoon. The next two days and nights were unbearable. The hospital was over run with old people who had the flu, so there were no beds on the main floors. I was stuck in emerg on a bed behind a curtain. The lights were always on, there was constant noise and screaming. To use the bathroom I had to walk down a hall in front of tons of sick people and then sometimes wait in a line. I was so weak and sickly so this was extra hard for me. By this point my jaundice was as bad as it had ever been. I was the brightest yellow and even the whites of my eyes were gone. I had also dropped 20 pounds. Those few days I didn’t even look in the mirror because it was too sad of a reflection. In my bed in emerg I would just sit with a bag in my lap, throwing up bile because I was still not eating, just wondering if this is how I was going to die. It was terrible. I am actually crying right now just remembering how bad those two nights were. Finally Thursday came. I had my stent put in and was FINALLY given a bed up on the surgical floor. My old stomping grounds! I had been there so many times throughout the years I knew a lot of the nurses so it was nice to be looked after by people who knew me. Thursday night I felt some relief. I think I started eating a bit? But truthfully I do not remember much. Friday morning I woke up, my nurse came in about 6:00am to take my blood and flush my port, and I instantly threw up. Something was wrong, I could just feel it. I had this nurse many times before so we were chatty and she said by and let me know she would be back at 7:00pm to see me for her night shift. The poor nurse for the Friday day shift had NO idea how bad her day was about to get.

By about 10:00am I began feeling really not well, but couldn’t place it. I just knew something was off. When Chris arrived that morning I let him know that I wasn’t feeling well, and I just had this feeling that it was going to be a long day for him. Minute by minute I began feeling worse  and worse, and this overwhelming pain was taking over. My nurse and doctors thought maybe I was just “backed up” and started giving me depositories to help get things moving. I knew that this wasn’t the issue but I’m not a doctor so of course my thoughts were falling on deaf ears. So here I am, sitting on the commode chair beside my bed trying to poop, while Chris is rubbing my back. God bless him. Sure enough, nothing happens. So they try again and pop another one in me. Back on the commode I go. Then as I’m sitting there I get this rush of pain come over me. It just hit me in a flash. I immediately just want all of my gowns off of me. I strip down and Chris has no idea why or what the cause is. I just started telling him I needed everything off. Oh by the way, I also had my period during this time which was AWESOME. So when I started taking off my clothes I also just threw my underwear with my hospital pad on the floor for Chris to pick up. Again, God bless him. I crawled back in bed and just started screaming. I didn’t know what else to do. I have been through a lot, but had never felt pain like this before. I was in a fetal position, naked, gripping the side of the bed, screaming in pain. I can’t even explain why screaming even occurs when your body is in the much pain. I have thought before walking past hospital rooms where patients are screaming and thinking “calm down there is no need to scream”. But seriously, when you are in so much pain it is like your body’s only release is to just scream. So I did. A lot of these next hours are a blur to me. I know at one point Chris had to step outside the room because he couldn’t take just watching me scream out in pain. After an in bed ultrasound, x-ray and then sending me down for a CT, it was determined that I had pancreatitis – a side effect from the stent procedure. I was pumped up on pain meds and thankfully they started working. But HOLY CRAP it is legit the most painful thing I have ever experienced. I do not wish that type of pain on my worst enemy. If you are new to this blog, read back and you will know that I have been through a lot of pain before. There is NOTHING like suffering from pancreatitis. So that Tuesday drive to the emergency turned into an eleven day hospital stay. It would have been longer but I’m crazy and asked to be discharged and sent home.

Ok this post is long enough for now. I’ll continue this story in a few days. Till then, here are some fun photos of me during that time.

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I’m just so annoyed

It’s happening again. I’m not a full on cancer snob, but I seem to be eye rolling quite a bit. If I hear or read another “courageous” story about so-and-so who had cancer once, twice, three times it came back – I might throw up. I know, it’s horrible to say that but I can’t help it. Oh she had cancer and then they cut it out, and some chemo occurred, then it came back and she had to do it all over again – what a miracle woman!

Just shoot me.

It is unfair to play the “who’s life is worse” game, because everyone has their own experiences. So I silently eye roll and feel this tightness in my chest from frustration. I just want to yell out, “Oh you think that is hard? PLEASE SPARE ME.”

I know, it’s not very nice. So sorry if you fall into this category. It sucks. Having cancer sucks. I get it, TRUST ME. I’m like this with everyone though, I don’t just single out my other cancer peeps. Broken limbs, child birth, minor surgeries, you name it I eye roll them. Sorry. I can’t help it that I feel like I just can’t even come CLOSE to relating.

But like honestly what the actual fuck is my life? How the hell have I gone through all this shit in just 4.5 years… and it’s still not over. Just when I think it’s over, and the hope starts to crawl back in, I get a massive slap in the face. So annoying.

What’s funny is when I meet a new healthcare professional who doesn’t know my history and I have to list it. Watching their face while I list out the dates of my surgeries, how much chemo I’ve had, what my status is now – their jaw drops. The surgeries I have had alone in just 4.5 years are RIDICULOUS. I remember going with Chris to see a taping of Cityline a few years back. They had a guest on who had/has cancer (I can’t remember), and she had 7 or 8 surgeries over a number of years. I remember thinking “Woah, that’s crazy.” I am almost positive that I have either surpassed her or have done it in a much shorter time span. My 7 surgeries don’t even include the multiple day surgeries I have had. Stop cutting me open people! I’d like to not have a panic attack on a cold metal table just for one year. Is that really too much to ask? Now in two weeks I’m getting a port-a-cath put back in which is FABULOUS because now I’m GUARANTEED at least one panic attack a month when they have to flush it. Obviously there will be WAY more every time I step foot into that dreaded chemo room and they start poking me with more needles.

Uggghhhhhhhhhhhhhhh. Can’t someone just give me lots of money so I can go on a trip and forget about life. Maybe just never come back? How long can I survive with this shitty ass liver if I park it on a beach?

If you could have 2 amazing years on a beach or 5 shit ass years on chemo – what would you choose?

SEE WHY THIS SHIT IS SO HARD. Longer life is better but quality of life is also better? Is that even a sentence that makes sense? If you can’t have both, how the fuck do you choose?

Through Sickness and Health

For us it’s more like through sickness and health, and some more sickness, now some health, oh wait don’t forget about the sickness.

When my health is a roller coaster you can’t expect my relationship not to be. Chris and I have to not only deal with our own ever changing emotions, but then also try to tip toe and figure out each other’s. It’s not easy. We decided we needed some navigational help. So we found a couples therapist and have now been seeing her every two weeks for the past three months. What we have discovered is the way we were raised has really impacted the way we communicate and interact as a couple. When I was going through chemotherapy and surgeries it was almost easier for us. Our only focus was my physical health so we had no time to really examine our mental health. Even though I am still physically sick, it is not as noticeable and doesn’t affect our day to day, so now our mental health is disrupting our relationship.

It is a day by day process because our internal issues cannot be resolved overnight. My own mental health changes minute by minute, so if I have a hard time with it how can I expect anything different from him. Going to counselling is not showing weakness in our relationship but it shows strength. The challenges with cancer doesn’t end when you are no longer receiving treatment, in my case it feels like it is just beginning.

Let’s Talk

A subject I have never been ashamed to speak about is my mental health. I struggle to try and stay in a positive mood, some days more than others. Instead of reminding you of all the ways I’m fucked up, I will inform you of the ways I am helping to take care of myself.

Eating Right – Keeping a clean diet when I am having a rough day is not easy. Nothing feels better then combining my tears with a tub of ice cream. I find however that afterwards I end up feeling worse. Now not only am I sad about whatever made me cry that day, but also upset at myself for eating all that ice cream. If I stick to healthy alternatives it is one less thing I need to be down on myself for. Also, all of those beautiful nutrients keep your cells happy and healthy which is never a bad thing!

Fresh Air – Seems like an easy fix, but pulling yourself off the couch some days can be tough. Just force yourself to get up and go on a quick walk outside, or go for a drive with the windows down. Removing yourself from your current position and feeling the cool breeze on your face can make a world of a difference.

Therapy, Therapy Therapy – I cannot express enough how much therapy has, and will continue to help me. I have been going to group therapy as well as seeing a therapist one-on-one for a while, but I recently have also begun to see a couples therapist. My relationship with my husband is fantastic, however we do struggle in dealing with the emotional aftermath from everything that has gone in the past couple years. Speaking with someone is helping us communicate better when we are feeling overwhelmed, stressed or anxious. It is so easy when you are sad or angry to take it out on a loved one. I am guilty for that. She is teaching us the dance of how we fight, and ways that we can change it so that we better understand what the other person is going through. I find people are often embarrassed to admit they are attending therapy with their partner. This is the wrong perspective. There is nothing shameful for wanting the best out of your relationship. These jobs exist for a reason, because it is COMMON that couples have issues when communicating. I am very thankful that my husband was open to attending when I first asked him. He saw the improvements I have been having one-on-one, and understood how it could now help us move in a more positive direction. I have said it before and I will continue to preach it – EVERYONE can benefit from therapy.

Pets – The love of an animal is such a beautiful thing. They do not care about any of the baggage you have, and just show you unconditional love. Now, I’m not suggesting in order to achieve happiness everyone must go out and adopt a dog (although that would be amazing). If your life style does not best suit a dog, that is understandable. It takes a lot of time and effort to have a dog and it is not for everyone. If this is you, then try to go for a walk at a dog park on a weekend. Not only will you love the fresh air, but these are the best days for PUPPIES. I find my local dog parks are full of puppies on the weekends, and I just love it. Puppies are so clumsy and dopey they can put a smile on anyone’s face.

Well there you have it, just a few of the things that help me to stay sane. You are also allowed to just stay in all day and binge watch tv. There is nothing wrong with telling the rest of the world to fuck off and just sit around in your track pants. Just do it one day though, the next day you have to get up.

The Challenge

Two days after my diagnosis, I was sent to St. Joseph hospital to meet with my surgeon who would now be looking after my case. My doctor walked in the room and sat down with a picture of a liver. He began to explain the different quadrants of the liver, and how he needs 20% healthy liver tissue in order to operate. As he placed the cartoon depiction of the liver on the table he pulled out his pen, and the circling began.

“You have multiple mets on each section of your liver. At this time we are not able to operate. I will be honest with you, it is very rare in cases like yours I am ever able to operate.”

My mom, my dad and myself all cracked. He let me know he wanted to start me on chemotherapy right away. He set me up with an appointment to meet my Oncologist, as well as my day surgery for my Port-A-Cath. This was all going to happen in the afternoon. I started having a meltdown and asked everyone to leave the room

“So, now I am really going to die.” – This was the first thought that had entered my brain. In that moment I reverted right back to a child like state. I got up from my chair, climbed up on the doctor office bed, and laid down in the fetal position crying. My doctor returned to check in on me and we began having what I like to call “real talk”. It was during that conversation something came over me. This feeling of determination, of not wanting to be a pussy about it. “Suck it up, stop crying, get on with it.”, I told myself.

I sat up, wiped my tears, looked him square in the eye, and gave him my challenge – “I challenge you to a surgery. You will be seeing what my liver looks like within the year. Year and a half tops.”

“Ok Jamie. Challenge accepted.”