CEA Blood Test

With my next scan only four weeks away, my anxiety is growing with each passing day. Thankfully, I can’t remember the last time I cried all day, so that’s a positive. I am trying to stay in the mind set that there is nothing I can really do to have the results I wish. The holidays were hard on my body. More alcohol than I have drank in the past three years combined, and enough sweets and salts to go along with it. But that was to be expected and I do not feel like I over indulged. I have to constantly remind myself that I have to quit the “blame game”. If my scan results are bad, that is not because I had a larger piece of pie for Christmas, or because I had two glasses of wine with dinner – there was nothing I could do to prevent it. I am starting to truly believe that. I am cleaning up my eating again because I was to stay consistently healthy for a longer period of time than just three month periods.

I’ve decided after this next scan to change up my follow up schedule. When most cancer patients enter the NED (no existing disease) stage, they all have roughly the same schedule. Two to three years having a CT scan and blood test every three months, the following two years it drops to every six, and at that beautiful five year mark it goes to once a year. This is because with each passing year, your chances of reoccurence technically lowers. Of course, every body is different, but overall this seems to be the case. I however would like to do things differently, as I always seem to do. With colon cancer a good indicator that something is changing is when your CEA (carcinoembryonic antigen) levels in your blood are increasing. This isn’t a perfect way to tell if your cancer is back, but it is usually pretty accurate.

Just in case you have no idea what I am talking about – the CEA test measures the amount of a certain protein that may appear in the blood of some people who have certain kinds of cancers, especially cancer of the large intestine (colon and rectal cancer). A healthy person should have CEA level under 4. A smoker is typically under 6. In the late summer of 2015, after my lung surgery, my CEA level was 4. Fast forward to Spring of 2016, when my cancer was back in my liver and lungs, my CEA level was 44.

At my last check up in October my CEA level was 0.3. Yep – that was a shocker. So this month if my levels have increased a significant amount, then something very well could be going on inside. However if they remain very low, I will feel confident that I am on the right track. So I will switch things up and only get my blood taken in May. If that level is also low then my new CT scan and CEA test will be in July – at the six month mark. If my levels are raised in April then we will scan away. I figure I will save myself the stress, and the radiation, if I push it to the six month mark. I haven’t really been able to unwind and enjoy my life in the NED world because my scan is always looming in the back of my mind. So maybe having it every six months will help with that. I guess we will find out.

Fingers and toes crossed that this scan and blood test is clear!

Finding The Word

Crying has become a part of my everyday life. It is just something that happens and I am almost getting used to it. During my most recent therapy session, my therapist wanted to know why. She wanted me to seek the reason as to why I cry. It started with me describing the memories that like to pop up in my mind daily. All of the ones of me in the hospital, getting poked and pulled and crying out for help. So then the question was, why are these memories the most prominent? What was the common thread that linked these together? I couldn’t figure it out, so we moved on. She then asked, if you could use one word to describe why you cry, what would that be? I had no idea which made the tears come even harder.

Vulnerable. I cry because I feel so vulnerable now.

No, that’s not it.

Independence. I cry for my loss of independence.

No, that doesn’t work either.

Misunderstood. I cry because no one really understands me.

Nope.

Grief. I cry as I am grieving the life I once had.

Dammit that’s not it either.

Then I thought about the hospital, and the memories that haunted me the most. The ones that like to creep into my thoughts and distract me from all of the positive. What was the common link?

No one was there.

When I was having anxiety attacks on operating room tables. I was crying and begging them to stop because I was scared. They would hold me down as I struggled and I would look up the bright light and wish it would all be over.

When my blood pressure spiked and my heart felt like it was coming out of my chest. I kept fading in and out of consciousness and thought I was dying.

When I was told they had to pull my liver drain out at my bedside and they would not wait for my family to come to hold my hand.

When I was struggling to stand and I had to call the nurse to wipe me after the washroom.

When they stabbed my arms and held me down trying to insert a picc line.

Nurses and doctors were there, sure. For the most part they were so friendly and helpful, but they are not family. I also fully understand it is impossible for family to be in the hospital 24/7, so I don’t blame anybody.

So now that we have figured out the common link, is that the reason I cry so often? What is the word that I feel would best describe my feelings in general?

Alone. That’s the word.

No matter how much I explain, no matter who was there for what, no one has been there for it all. No one is in my head having to live with these thoughts, and the ones described above are just a handful of them.

Alone does not only describe those moments, but so many others. I have met a lot of wonderful people who can better understand my experiences, but no one fully can. No one I have met has had 6 surgeries. No one I have met has been told twice that they are inoperable.

So now that I have named it, I have to work on accepting it. There will never be anyone who will fully understand other than myself. So that is the next step. I am working on it, alone.

Mind Trip

Last night I walked in the door after being in Vegas for 4 days, and it took me 5 minutes to realize I was in a mood. I felt like I would snap at any minute, and then did on Chris. I was frustrated and annoyed and just put myself to bed. Today I woke up feeling the exact same. Tried to take the dog for a walk, but still couldn’t shake this feeling. After showering Chris asked me to come sit down and talk to him so he could try and figure out what’s wrong. One minute later I was crying, and wasn’t sure why. After a few minutes of tears and trying to assess what was going on in my head I figured it out – In Vegas I was the closest thing to my old self. I haven’t felt that way in almost 3 years.

I laughed and laughed, I got drunk and had a hallway dance party to Mariah Carey – I felt free. People would be looking at me for reasons of their own – maybe I was laughing too loud, or dancing like a fool, or for the first time in a long while, because I actually looked pretty and was walking with confidence. All of these feelings in me I have not felt in the longest time. I blended in as just another girl who is having an amazing time in Vegas. I went to bed at night and only thought about how I can’t believe I didn’t hit on roulette, and what tables I would play in the morning. That was it.

Today all of that is gone and I am back to reality.

I broke. Chris sat there and just watched as I went from tears rolling down my face to a full sobbing mess. He tried to make me feel better and say that everyone feels that way when they get home, that’s why it’s called a vacation. But I hated that response and started yelling through my tears, “It’s not the same, it’s not the same, it’s not the same!” I threw my face in my hands and sat there balling my eyes out and trying to catch my breath. I never realized how much I missed my old self until I saw a glimpse of her again. She was fun, confident, independent, smart, care free and beautiful. This new person I am still trying to wrap my brain around. I am better in many ways but worse in others. I feel like a solider who has gone to war. They have seen so much death and despair. They had to wake up everyday and fight for their life, and may have scars to prove it. Then they come home and just have to try and forget everything that their memory won’t let them. They are forever changed.

My break down was interrupted by Chris’s phone ringing, which was perfect. I told him to take it and went back to blow drying my hair. I’ve become really good at putting the cork back in the bottle and just continuing on with my day.

 

Clear

I have played out this day over and over in my head before. Many nights I would lay in bed trying to fall asleep and fantasize about my doctors saying to me, “Your scan is clear.” I thought last year it was going to happen, and then was crippled by the news that all of my cancer was back. This year I was hesitant. I felt good and I know that I have changed so many things in my diet that are positive, but there was always the chance. Saying I was nervous would be an understatement. I was an emotional wreck in the days leading up to my results appointment. When the day finally arrived I walked into the office as he said walking behind me, “So your scan looks good.” Get out. I was shocked. Even my CEA blood levels were only 0.3! Chris cried, and I sat there taking it all in. In my fantasy I jumped out of my seat and hugged Dr. Jay. I cried and wanted to film it so I could share the “reveal” video with all of my friends. In reality, I just sat there almost faking happiness.

I am happy. I am beyond happy. I need a clear scan to then have another, and another, and eventually stop worrying every day about this damn disease. I know I will never be “cured”. Stage four cancer patients always live in fear. But I would love to have one day in the future where I wake up and think, “Holy shit I didn’t think of cancer once yesterday.”

For now, I’m going to try and forget that January is just three months away, and this blissful life could come crashing down.

Distractions

If you are a frequent reader of my blog you may have noticed I do not write as often as I used to. There’s a reason for it. Now that I am not only working on myself physically but also mentally, I have been trying to find healthy distractions to keep my mind occupied. These range from walking the dog, visiting value village, among other things. I’m not saying writing in my blog isn’t healthy, but it does force me to reflect on my life. Most days I would rather try not to focus on my current life situation. I still haven’t stopped crying at least once a day, but the tears are becoming less and less. I started seeing my therapist again so that has also helped immensely. She is helping me to become more social again. I always retreat in my cocoon for a bit after surgery, but this time it has lasted longer. I have developed trust issues with friends since that big blow out in the Spring with one of them. I’ve developed this idea in my mind that if I don’t hear from them, then so be it. I used to be the one who would make sure to always maintain those connections, but that old me seems to have fallen at the waist-side. This is what I am working on. I have to try and believe that not everyone is a bad person and I should stay connected. It will take some time, but I’m willing to take those baby steps. As for this blog, I’m not quitting don’t worry! I still have so much I would like to say and share – it just may take a little longer for me to do so.

Flip Flop

Do you want to know how I know my brain is fucked up right now? I just had a great day in Toronto. It started because I had to go to the hospital for a blood test, but even that didn’t bother me. After, I went shopping with my now sister-in-law and got a sweet new pair of jeans. I haven’t purchased jeans in 3 years. I have been reluctant to do so, since when I am sick I live in sweat pants and leggings. But today I said, fuck it, I am buying some nice ass fucking denim. We had a nice lunch together, I saw her new place and just chilled. Here are some important points to note:

1 – The whole purpose of this trip to the city was for blood work

2 – Every time I tried on pants I had to make sure they didn’t rub on my scar

3 – My short hair was air-dried and not in the best shape because it’s hard to style myself

4 – I had to buy a shirt in a medium instead of a small just because the bumps on my stomach showed

Even after thinking and talking about all of those things, none of it bothered me. I was out, surrounded by good company and I was feeling great. On the drive home there were some great tunes on the radio and I was car dancing and reflecting on my lovely day. What happened next? Tears. Here are some important points to note:

1 – The whole purpose of this trip to the city was for blood work

2 – Every time I tried on pants I had to make sure they didn’t rub on my scar

3 – My short hair was air-dried and not in the best shape because it’s hard to style myself

4 – I had to buy a shirt in a medium instead of a small just because the bumps on my stomach showed

It’s funny how none of those things even bothered me at the time. They came in my mind and just as quickly left it because that is just normal life for me now. But as soon as I am alone and its quiet, my stupid brain doesn’t shut off and just likes to put emphasis on all the bad parts. Thank goodness my therapy sessions start up again next month.

Oh She Glows – Apple Bake

First off – For those of you who have read my post from a few months back about how I am was going to start cooking everyday, and you are sitting around and laughing at my lies – I would just like to say, it’s been harder than you think.

I had good intentions, but then I went through a major slump. I was depressed, eating still fairly healthy, but not perfect. Most days I didn’t want to do much of anything. I also was stressed over planning for my wedding – which I will post about on a later date.

Now – back to the good stuff!

This oatmeal apple bake found in the Oh She Glows cookbook is AMAZING. I have actually already made it twice. It is so easy once you figure it out for the first time.


Here is a picture of all of the ingredients I used the first time around. I try to stay as healthy and organic as possible. The Simply Organic products are my absolute favourite.


And there is the beautiful finished product. I transferred it to a few containers as it keeps really well in the fridge – I continued to eat it up to 4-5 days later. I am also sure it freezes really well in case you have too many leftovers.

After doing it the second time around I changed a few things. For starters, as you can see I did not add pears. I am not the biggest fan of baked pears. I also included 4 apples and did not skin them. The first time I made this I found skinning every apple to be tedious and I just didn’t want to do it again. It honestly tastes the exact same.

Highly recommended!!

Lose My Breath

Three lung surgeries in one year, that fact is a little tough to swallow – and breathe. When your bad lung is relying on your other lung for support, but that lung was just bothered a month ago, it’s a struggle. Thankfully I am through the thick of it now. My hospital stay this time was shorter than usual. In on a Tuesday and out on the Saturday. Other than the usual chest tube annoyances, it was a pretty regular hospital stay for me. What I was not expecting since I was feeling like a pro now when it came to lung surgeries, was just how different this one was. My first two were wedge resections, this one was a partial lobectomy. What is the difference? Well the simplest way to put it is that my first two tumours were on the surface of my lung. My surgeon just has to go in and cut it off the top. My last tumour was in the tissue of the lung, so this time he had to take an actual portion of it. So that on top of everything else, made it hard for me to even walk up the stairs. One day I was so winded when I got to the top, I sat down on the bed to catch my breath. I was so exhausted from just those few steps, that I did not want to have to deal with it all over again just to get back downstairs. So I just sat there. This was my life now. Would I rather starve on the couch or get up and deal with not being about to breathe? I’ll starve.

Best Friend

What is a friend? Or the difference between a friend, and a good friend, or even a best friend? So close to you they are like family. How should this relationship be? During my experiences I have seen many people jump in and out of each category of friend. Some seem to understand it all at first, and then slowly fall away. There are certain ones however. Ones that know that some days you might be a little more emotional. Some days you might be extra distant. This many go on for weeks – barely any communication with one another. But that doesn’t matter to them. They are able to put their ego aside and have empathy. They are your voice when you are not able to speak. They display true friendship even when you are unable to witness it. THESE people are what it means to be a true friend. I hope everyone can find it within themselves to be this person every day. To think of others before themselves. To have understanding and compassion. It’s really not hard. 

Unraveled

These past two and a half years have been go, go, go. My day to day focus was usually about preparing for something coming up. Whether it was a surgery, chemo, whatever. I’ve always been told by others that they are surprised how well I am able to hold it together. They weren’t wrong, for the most part I did have it all together. Now I just feel completely unraveled. It is almost like being sick was in a way, easier, because it was physical. I had a focus, where now I don’t. Everyday I have a fist full of sand that is just leaking out of every crack and I am just struggling to keep it all intact. It feels like an impossible task. 

I have learned along the way to fake it pretty well. So I’m not sure most would even think anything is wrong. In a social setting I can handle myself and can speak and act as if everything is just fine and dandy. Inside however, I feel black and cold. Every day I feel alone and trapped in this hole that I can’t get out of. People can say they understand, but when it comes down to it, they don’t. All the depressed thoughts have been pushed aside week and week because I have had bigger things to focus on. Now everyday each little thought pops out of its hiding spot and adds to the pile of shit in my head. 

The wedding is just a few weeks away and I am trying my hardest to pull it together. I thought the planning of it would take my mind off of everything else, but in fact it makes it worse. Every little detail and stress makes me want to pull more and more away. 

I’m sure it won’t be like this forever. But just a day of it feels like an eternity.