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 ✌️

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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.

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.

My first Vlog

Two weeks ago I met with Dr. Calvin Law, the Chief of Staff at Sunnybrook hopsital for my second opinion. Then I came home and made a 16 minute video lol. I have been contemplating ever since if I should post it. First, the reason for the video:

Sometimes when I sit down to write a post I feel like even though I am not editing my feelings, the words just don’t express them properly. So I have been debating for a while to try out a video to make it easier to say everything I want to say, but the problem is I am super lazy and do not want to learn how to edit them.

Here are some things you need to know before watching:

First – I was out with my mom all day in Toronto running errands. Then we went to Sunnybrook and were there for 4 hours waiting and talking to the doctors and nurses. Needless to say, I was exhausted.

Second – Chris was away on business so I came home to an empty house.

Third – Sometimes I just need a good cry, and it is constant throughout the entire video.

So – why post it at all? Well I think it is important that you see a glimpse into just how my brain works and the emotions, thoughts and feelings that bounce around within my head. I have never been filtered before, so why edit it down and cut out the quiet moments or the moments where I may not make sense or am wiping my nose.

I will say this, I have not felt this low since. I can’t use the word “rollercoaster” enough in this entire blog, but it so accurately describes my experiences with cancer. I haven’t actually cried in days, so don’t watch this and then freak out and call me (aka – Mom I know you are about to lose it lol)

I do ask one thing though – If you click on the link, please commit to watching the full 16 minutes. Yes, that is a long time to watch me cry and ramble on – but if you can’t handle seeing what it is like to be me for 16 minutes then why the fuck are you even reading this blog?

Young. Female. Cancer. – YouTube

Surprise, I’m Grieving

I’ve gotten pretty good at smiling and replying “I’m good!” whenever I’m asked the simple question, “How are you?”. It’s not 100% a lie.

Since I start treatment in two weeks I have been kind of living in this haze. I know what’s coming but I’m also forgetting that my whole life is going to be flipped upside down again soon.

So I’ve been back to my old hermit ways. Keeping busy with my own stuff but not really seeing too much of anyone. This time it is different from before, at least it feels different. I don’t know if I will ever come out of it. I just truthfully do not have anything to say. If they try to get deeper after my “I’m good!” response – then I have nothing for them. No one can even begin to grasp what it is like to grieve your life all over again. I had just found my feet again, and even put heels on them I felt so confident, and then BAM – pushed back down, kicked and spat on. I know there are those with good intentions who try to compare, but I just feel like they can’t.

This is my THIRD time being told that it is hopeless and I’ll be on chemo for life. Yes the positive is they were wrong twice before, so there is a chance they are wrong now. But you try hearing the words “you are going to die” THREE times in under 5 years. It completely destroys you. This time is also VERY different because EVEN IF they try and operate it is so risky and invasive that it might kill me in the process.

Grieving is hard. I honestly believed it was all over and I had beaten cancer. I fantasized in my head everyday of how it would be going back to work. How maybe I should start speaking out and giving others hope for cancer survival. How my story is so crazy and that others need to hear it. I thought about what house I want to move into in 10 years and where I would like to travel to. I even thought about turning all this into maybe a book, or evolving my blog into a wellness and lifestyle one that didn’t just focus on cancer.

I made plans for my future life.

Now that future is grey. (And please don’t say everyone’s technically is, because I’m not in that place right now. Also people who preach that 9.9 times out of 10 are healthy so they can really shut the fuck up.)

So how do I even begin to explain to someone the amount of grief I am feeling? I can’t, so I don’t. Ok so next comes the sentence, “So we don’t have to talk about it.” Right – so then what is there to talk about? Surface level stuff that I just don’t care about right now? Yep, and I’m not interested in that either. I have to be selfish and focus on what keeps me mentally stable, and that right now is keeping to myself. I might feel like this for a few more weeks, or it could take months. Who knows. I’m in no rush to change it and I’m not apologizing for it either. I’m sick and I’m dying so I don’t have time to not be selfish.

Ugh

Well it’s been almost three weeks since I found out that chemotherapy will be coming back into my life, and almost four since I found out cancer was even back. I thought it was going to be a whirlwind again of port surgery, and then chemo straight after, but surprisingly it hasn’t worked out that way. I am having my port surgery tomorrow, which I then assume I will be starting chemotherapy the following week. I have had some time to digest the news, and I am starting to not cry multiple times a day. So I’ll take that as a win!

In the mean time, I’ve cleaned up my diet again and started back on mistletoe injections. If you do not know what I am talking about, search “mistletoe” in the bar on the right and read all about it. Cleaning up my diet has consisted of cutting out alcohol, and trying to stay away from foods with processed sugars. I allowed chicken back into my diet a few months ago, so now I am only eating it once a week if I can help it. Raw juice is also back (though it never technically left), but now I am making sure to drink it at least 5 times a week.

What type of chemotherapy will I be on this time? Well that question I still do not have an answer for. I left a message for my oncologist letting him know that I would like a meeting with him first before I start. I have 5000 questions running through my mind and I require answers before they can start injecting me with poison again. A few of them are as follows:

  • Are we looking to kill the cancer or just sustain my life?
  • Can I start on a lower dose?
  • Is FolFiri the best option or is there any others?
  • Are there drugs that cost money that I can be offered?
  • Will I be here every two weeks?
  • How often will I be scanned?
  • In the future can I come every three weeks, or maybe have every third month off?
  • What can we do to lower my anxiety attacks in here?
  • I don’t want to compromise my liver function, so what marker will you be looking at?
  • How much growth of the tumours can my liver take?

I feel it is extremely important to create my own treatment schedule. I know my body, I know what it can take and I know what my limits are. If we are planning on sustaining my life, then I don’t want to have the rest of that involve a bucket for five days every two weeks. My strongest defense against this disease is the fact that I have always been my own advocate. I consistently ask questions and stand up for myself. I do not let any doctor tell me what to do. They have a strong say, but I view it more as a consultation rather than an order. Every conversation with every doctor has been just that – a conversation. Never be afraid to do this for yourself. If you think they will be annoyed by you – then first off, get a new fucking doctor. Every single one has told me that I need to keep being an advocate for myself because I obviously know what I am doing. Look how far it has taken me! My main surgeon thought I would be dead years ago. Maybe I would have been if I didn’t listen to my body and take my life into my own hands. I’ve taken risks and for the most part they have paid off.

My next advocate moment is a second opinion. I trust my surgeon with my life, but if he says that surgery would be too difficult, then let’s find someone who may think differently. Thankfully again, he is on board. I called his office today and gave him a name of a doctor, so I’m just waiting to hear back. His receptionist let me know that he knows him well and will probably call him on his cell – which is perfect.

Side note – If you are wondering where the tricky tumour is – liver or lymph node – well I still do not have an answer. 

So now I am just looking forward to a big anxiety attack tomorrow followed by a lot of crying, which I am sure will last the rest of the week. Having the port-a-cath put back in will be a big reminder that this ride for me is still not over.

By the way – I know everyone means well, but if you have my cell phone number please do not send me a “thinking of you” message tomorrow. I can’t explain why that bothers me so much but it does. I guess when you have been getting them consistently for 4.5 years they start to lose meaning. Like I’ve mentioned before, I’ll reach out when I want to reach out. No one is above this. So if you think “Oh she doesn’t mean me though” – you’re wrong. Sorry if you do not understand – and be thankful if you don’t. That means you have not had a consistently shitty life for an extended period of time.

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?