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.

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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?

Honestly, I hate everyone.

I’d like to get off the roller coaster now.

So much has happened since my last post, and I apologize for not keeping up with this but I was just trying to “do me”.

To sum up the ending of what happened in April – they found nothing. Since there was so much unknown, my surgeon wanted my scan to be moved up from September to July.

Last week he called me the same day as my scan to let me know they found cancer in my liver. To say I cried is an understatement. He let me know that there are three new spots, and he wanted me to come in to speak to him about the next steps. So the next day we drove down and he explained in more detail about what was going on. The three new spots are in a good place that he could remove them, but he worries that another surgery would put too much stress on my liver. He could operate and then I could suffer from liver failure. He was also worried with the amount of scar tissue I have developed. Surgery would be very invasive in order to combat this and he would have to cut the full width of my mid section – which again is extremely dangerous. He never gave me the impression he was super confident and on board with this procedure, but it was my best chance. Tests leading up to the surgery would include a PET scan, a MRI and a colonoscopy to determine if the cancer was anywhere else. Operating on my liver would compromise my immune system so it would put me at a greater risk for tumour growth.

My PET scan was on Monday and I have been on pins and needles ever since. On one hand I didn’t want them to find anything because I need this surgery. On the other hand, this surgery scares me more than any other I’ve had.

I went up to his office before my MRI yesterday to drop off my PET scan images, and let his receptionist know to tell him I want an answer ASAP.

After 45 minutes in that magnetic tube they let me know he called down and wanted me to go straight to see him. My stomach flipped. I knew he found something on that scan.

He showed us the glowing dots of cancer we knew about, then he showed me a dot we didn’t. Turns out, it was on my scan in March but it is in such a weird spot it was hard to pick it up.

Where is it you are wondering? Well that’s the problem, they don’t know.

It is right by my liver, so it is either in a lymph node or attached to the tissue surrounding my bile duct and both arteries running through my liver. Either way – it isn’t good. If it is in a lymph node that means the cancer has spread outside of the organs and I will never have a chance for surgery again. If it has attached itself in between the worst possible place, it is extremely dangerous to remove. He would have to refer me to a transplant surgeon who would perform, as he put it, “a very radical surgery.” Since they are used to working and operating on and around these arteries and bile duct, they would best know how to proceed.

Either way – he wants me back on chemo.

I asked to sit down. This was the worst case scenario for me. I hate chemo more than I hate surgery. There is no part of me that wants to go back on that.

I asked him through my ever flowing tears if there was any other solution. What if I ate super clean for two months and then we scan? He wasn’t having it. He told me he can’t tell me what to do, but he very strongly disagrees and I could put myself at a greater risk. He wants my port-a-cath put back in next week, and I would start back on folfiri chemo the week after. I was speechless and just said I wanted to go home.

The crying didn’t stop, it still hasn’t. Now I’m stuck with the decision to be on chemotherapy essentially for life, or refuse it and risk the tumours growing and compromising my liver function. I honestly don’t know what I’m going to do. The idea of going back on chemo till the end of my day is the worst thing I could ever think of. At the same time I want to continue my life on this planet not for me, but for Chris and my family. I know it would hurt them more to lose me than it would hurt me to be on chemo.

Either way, I hate everyone reading this. I hate that you all have zero idea how amazing you have it. I hate that I might not live to see 40 and you are upset because they didn’t get your order right at the drive thru. Can’t wait to be sick everyday and blow up again and lose my hair. Fun times ahead.

Just Keep Being You 

Last year around this time I had a falling out with a very close friend. It was extremely hard for me – even put me in the hospital from the stress. I internalized it and began to believe that maybe this is how everyone sees me. Maybe people are pretending to be my friends just because they don’t want to be that person to break up with a friend who is suffering from cancer. I started to not trust all those close to me. To this day it saddens me and although I try to push it aside, it still affects my self esteem and self worth. 
Yesterday I came home from dinner and found these beautiful flowers on my kitchen counter. The note from who they were from was surprising and so perfect. No – it is not from that old friend. It is from a mutual one. One who was closer with her than she was with me. One who was there the night everything blew up. One who stood up beside me and said that this wasn’t right. One who still continues to stand beside me. I am forever grateful and this note moved me to tears. When one friendship ends a new one blooms. 

Motivational Calendar

My mom gave me a daily motivational calendar for Christmas, and truthfully I was sort of disappointed. Ever year she gives my sister and I a calendar, and I look forward to it because I always hang it up and keep track of my appointments. This year however she said this one spoke more to her. So I put it up in the bathroom to rip off during my morning routine. The strange thing I have been noticing is that most days it eerily speaks to me. 

For example: On the day of my results appointment I forgot to rip it off in the morning. At night I was brushing my teeth and noticed the wrong date, so off it came. The saying for that day was, “Keep on keeping on”. Couldn’t have spoken to me more and it made me feel a little more at peace before heading to bed. Now I’m not sure if daily I am just finding something to relate it to, like when you read your daily horoscopes in the paper, but I am choosing to believe that this calendar is really speaking to me. So today I was coming out of the shower, feeling bloated and with low self esteem while looking in the mirror, and I ripped off the page. To my surprise (but not really anymore) it spoke to me again. 

“You’re in pretty good shape for the shape you’re in.” – Dr. Seuss

That is me to a T. I’m not in the best shape of my life, but for what I have to deal with, I’d say I’m doing just fine. 

So this called for a progress picture since I have not done one in over a year. Well low and behold I am in the best shape I have been in since I gained all of that weight back in 2015. I still haven’t been able to work out (hopefully signing up with a physiotherapist soon), so I owe it all to my diet. Great way to turn a low self esteem day into a high one ☺️. 

Oh She Glows

Eating out is so much easier than cooking. That is probably one of the main reasons I got into this mess – I was the queen of fast food. Even though I no longer spend my days in a drive-thru, I do still eat out a lot. With my kitchen renovation complete, I thought this would be the perfect opportunity to actually use it. For my birthday I received the Oh She Glows vegan cookbook by Angela Liddon. I have heard the recipes are easy to follow and that the food is AMAZING. So let’s give it a shot. For the next little while I will be trying to make one dish a week. I will post my progress on here so you all can follow along! This will also hold me accountable so I can’t just run out and grab a pita. Maybe I will actually enjoy this? I will get started after my next surgery (which is July 5th). My food will become my new drug since I am not being put back on chemo right away.

 

 

 

Remember Me?

It is hard to explain the way I have experienced this year and a half. One thing I have come to realize, is that it really did fly by. It seems like just last week I was leaving work and heading to a bar to throw back a couple on a Friday. Regular life. I was laughing because I was genuinely happy, and looking forward to all that life would bring me in the future. This I believe has been one of the main issues when it comes to my relationships with other people. In their world, a lot has happened in a year and a half. Maybe it dragged on for them because they were stuck in some boring job they wanted out of. So a week goes by, then a month, then a few months, and all of the sudden we have lost touch. The reasoning is usually always the same, “I’m so sorry…I’m sure you have had a lot going on… you seem really busy…. I have been keeping up with your blog and Instagram.”. Oh have you? Good for you. So because of that you think that we are still friends? I guess it was “cool” to have a friend that was dying at first, but now that I have decided to turn it all around you don’t need me on your roster anymore. Well here’s the truth. It hurts. Inside I am still the same person who isn’t sick. I know I can’t do everything I used to be able to, but that doesn’t mean not to ask. Yes for a while I was unable to drive – but that was months ago. I am fully capable now and could come visit – but how would you know that because you never care to ask. 

It is very true that when something big happens in your life you discover who your true friends are. What they don’t explain is if you wait it out, a lot of those friends will fizzle away to leave you with your actual TRUE list. Thank you for those who continue to stick by my side even though I am no longer the “cool dying girl”.

For everyone else, please learn from this – as I am sure one day someone else you know will need support. A simple text every now and again to just say hello, or send a funny picture, or whatever – really says a lot. “I think of you often” doesn’t do anything.