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

Young, Female…… Cancer

It’s been a hard few weeks. I lost a friend, a confidant, a fellow war hero. I met Damian early on in one of the cancer peer groups, and we instantly connected. He also had stage 4 colon cancer, but we were experiencing the disease much differently. As I struggled with the ups and downs from surgeries and being on and off chemo, he was more stagnant – only on chemo, every two weeks with no breaks. I admired him. We developed a relationship outside of the cancer groups, and it was beautiful. He would confide in me with his struggles and then laugh at my stories of telling people off. He was quiet, and it was hard for him to really talk about the way he felt about cancer. He was a self-employed electrician who loved his family and wanted to make sure they were taken care of. He had chemo consistently every two weeks for over three years – and he worked throughout it. Not only that, he would play hockey as well. He said it helped keep him strong and fight through the exhaustion that comes with those lovely chemicals. Did he ever complain? Not that I can recall. I did though. I loved a good bitch fest and would share with him my fears and anxieties over life, and he would listen and smile. Afterwards usually came a message from me apologizing for being so insensitive. “Here I am complaining about recovering from surgery, and you haven’t been given that option.” It made me feel like shit. We in the industry (of cancer, that is) call this “survivors guilt”. One of our last conversations he had told me that his liver was failing and that he was starting to turn yellow (jaundice). I tried to cheer him up letting him know that everyone loves The Simpsons, and that he just needed to keep his head up. It wasn’t long after that conversation that I was told he had passed away. I knew it was coming. The things he was telling me about his symptoms and condition changing were all the standard “you don’t have long” descriptions. I tried to hold on to a little bit of hope, but inside I knew it was the beginning of the end. The loss of a friend is hard, but this was much greater. We were fighting the same war, in combat together side-by-side. There is no rhyme or reason why he was shot first. Now, the survivors guilt grows stronger, but I am trying not to let it take over my life. Instead, I’m hoping it changes it.

At his viewing I spoke with his wife and she said something that surprised me, “Damian had a hard battle with chemo but you have had to have chemo and surgery and everything else that comes with that”. I never knew they thought of it that way. I always thought that there was a small part of Damian and his family that were, not resentful, but maybe annoyed at the fact I was given so many chances for surgery. Kind of like, “What does she have to complain about? At least she is getting surgery”. To my astonishment it was the complete opposite. They felt like he had it not easier, but that we both had it just as hard.

So I started to do some self reflecting. Maybe I’m not “lucky to be alive”. Maybe I’ve worked fucking hard at it.

Before I continue I would just like to say that I am not saying that Damian, or anyone else for that matter did not fight their asses off. This disease is not predictable and it is constantly changing and evolving. Everyone who has it is a hard ass fighter. 

I always put myself in the “lucky” category. I considered myself lucky that it was found when it was, that I had the surgeons that I had, and that I was winning the battle. But maybe that is not the case. I think the only thing that luck had to do with, is the hospital I was referred to. St. Joseph’s Health Centre in Toronto does not get enough credit. From my surgeons, to my oncology team, to my nurses, and the administrative workers – everyone there has played a vital role in my survival.

But so have I.

I have changed my entire eating habits. I have researched my disease and helped to dictate my chemotherapy schedule and dosage. I have said if I would like to move forward with a surgery, and sometimes have even got to choose if I would like it sooner or later. I pushed myself and worked hard during my recoveries in order to heal faster. I have sought out group therapy, couples therapy and personal therapy so I am not lost in my own mind. I have listened to others along the way and have learned from their experiences. I am still learning and evolving. Cancer has changed me physically, mentally and socially. It will be forever a part of the description of myself.

Now however, it is time to take a breath. The past three and a half years I have been driving this speeding car trying to avoid every obstacle, and it is exhausting. It is time for me to stop breathing in the stale hospital air and start enjoying the outside world. I need cancer to become a lower descriptive word than the third. So I am taking a step back from blogging and social media. I am still here if anyone comes across my page and has questions about anything – I am always here to help. It is time for me to find my passion in life and do something that brings me joy.

My name is Jamie. I am young and a female with a loving husband, two beautiful fur babies, a good friend, smart and intelligent individual who is driven and opinionated, who also has cancer.

Bye for now.

Xx

Ativan

So here is part two of my addiction story….

During my many chemo sessions, it became apparent to not only myself, but to all of the nurses working in oncology, that I was developing MAJOR anxiety before even stepping foot into the clinic. My oncologist wrote me a prescription for a drug called Ativan (also known as Lorazepam) and told me to put two under my tongue an hour before each appointment. Well I did, and they did nothing. I kept the bottle in my cupboard at home and thought nothing of them. 

Before each and every surgery the same thing would happen – I would have a major anxiety attack. After the first major blow out I was also prescribed Ativan to be taken 30 minutes before being called into the operating room. Just like with the chemo anxiety, they did nothing. 

All I ever knew about this drug was that is was to help with my anxiety. From my experiences I thought it just didn’t work for me. 

While packing in March to head on my Thailand and Australian adventure, I was taking out the Advil bottle and noticed the bottle of Ativan. “Perfect find!”, I thought to myself. Just in case I have an anxiety attack while away, I will have something to help calm me down. I made an appointment with my family doctor before leaving, and told him that I had a bottle of Ativan and it never worked for me before. He then prescribed me a bottle of Clonazepam, and said they might work better for me. 

Both Lorazepam and Clonazepam belong to the drug class known as benzodiazepines. They act on the brain and nerves and produce a calming effect. 

While on the 17 hour flight to Hong Kong, my panic set in. So I popped a Clonazepam and low and behold, I felt nothing. 

Great. My anxiety levels are too high for these drugs apparently. 

A few days later, finally in Thailand, I was having some anxiety before bed and thought I would try just one of the Ativans. 

The following day I woke up and could not believe it – I actually had a full nights rest! 

I have not slept through the night since I don’t even remember. With my multiple keloids on the body, and the anxiety and pressure from this cancer world, I toss and turn throughout the night. But now, I feel rested and AMAZING. Well, this is a miracle. 

I decided right then and there, I would take one each night to help me sleep. They did not make me groggy or even put me to sleep. But what they did do is KEEP me asleep. Which was the best thing I had experienced in a long while. 

In May I went for my consultation with my surgeron for my upcoming surgery, and I told him about how Ativan has helped me, and if he could right me another prescription. He did, but only for 3 months because he said he wasn’t allowed to write one for longer than that. Well that’s annoying, but I thought nothing of it. 

I dropped off my scrip and when I went to pick it up the next day, the pharmacist let me know that I was NOT allowed to get my next 30 day refill till the actual day it was due. Ok, sure lady. Again, I thought nothing of it. 

Now in August, I made an appoint with my family doctor again to have my pre-op for my colonoscopy. During our talk he saw I wrote down that I was taking Ativan. That reminded me, my three month prescription was almost up. So I asked him to write me a new one. 

“Are you addicted?” He quickly asked. 

“Um no. You know me I hate taking drugs. This I just use to help keep me asleep. No big deal.”

“Ok. You are a special case. With everything you’ve been through I can understand if these help you.”

I was so confused. Why was he being so weird? 

“Are these super addictive or something?”

“YES. Very much so. But you are different than most people and I know you wouldn’t be taking something unless you truly needed it.”

He wrote the prescription and told me to just have the pharmacy fax him every three months for a new one. 

I went home and spoke to Chris about my conversation with my doctor. He and I agreed that if it was helping me right now, then it’s ok. 

Later that night I got into bed, took my pill, and then began googling “How bad is Ativan?” – oh the things that came up. So many blog posts about people who were given it in the hospital, and it took them months and sometimes YEARS to get over the withdrawal. It explained how it is the most additive drug and that you should start with a low dose of 0.25mg. 

Holy crap I was taking 1mg! 

The next day I woke up and said, “Nope, I’m never taking that again.” 

The following day I woke up, and was instantly in withdrawal. My skin was crawling, my heart was beating out of my chest, I felt super anxious and couldn’t stop crying. Just a complete mess. I didn’t know what to do. If I took a pill to stop it, I would still have to take one at night – so then I would be taking two pills in one day. That wasn’t the answer. I called my doctor but he wasn’t in that day, and I was told he would call me on Monday – this was Friday. 

I cried and cried to Chris – I was so mad at myself for getting into this predicament. I started reading online how hard it was to come off of this drug, and that got me even more scared. Chris was amazing and calmed me down. He let me know that I am not a drug addict, that my case is different. If I needed this to help me get to sleep then so be it. 

I, on the other hand, did not agree. I couldn’t live with myself if I knew I was taking a drug that was highly addictive. I think it would cause me more stress. From all of my readings it seemed like the best way to get off of it was to slowly drop your dose down. So Friday night I took a pill, and then I decided Saturday I would not. When it came time for Sunday I though, hell I will roll the dice and just not take one tonight either. On the Monday I felt the withdrawal, but it wasn’t overwhelming as it was on Friday. When my doctor finally called I told him my predicament and he said very firmly, “Do not go off of this drug cold turkey. You have to gradually take it out of your system.” 

Well as we all know by now, I rarely listen to doctors. 

So I decided to push myself, and if it got too bad at any point I would give myself permission to take a pill. 

It took about two weeks, but I finally began to feel back to normal. Now, here is the craziest part. My depression also has seemed to have left. I no longer feel as though I am living in this dark hole. I truly believe that has to do with being off of the drug. I still have my days obviously, but they are not a constant anymore. 

My sleeping is back to being scattered, but now I am looking for more natural remedies to help with this. 

Addiction

I avoid drugs. I know how easy it is to become addicted to pain killers, so I was always scared to take them. Since I have always been vocal about this to all of my doctors, they are never worried about me and always tell me, “Don’t be a hero and just take the drugs if you need to”. (Well ok they do not use the term “hero”, that’s my ad lib 😉) 

After my second surgery in 2014, I saw first hand how easy it was for my body to become addicted to drugs. Even though my mind wanted nothing to do with it, my body began going through extreme withdrawal when I tried to stop taking the Oxycodones. My skin felt like it was crawling, I was sweaty but shivering, and my heart felt like it was going to beat out of my chest. I was forced to continue to take them and gradually reduce the dose. Since then I have refused to take anything other than just regular ole Advil – well until recently. 

I was in a lot of pain and discomfort after my recent lung surgery, and when I went in for my post-op, my surgeon told me to just take even a single pill if I think it might help. After discussing it with Chris, we both decided that I will have to try it as the Advil did not seem to be doing the job this time. So I cut the oxycodone in half and took it at 6:00pm. At 9:30pm I still felt no relief so I took the other half. By 10:00pm my whole body was numb and I felt drunk. No joke. I had to put myself to bed. 

The following day I had plans in the morning so I woke up and felt groggy, but I figured that was only because it was 8:00am. It wasn’t until I was half way to my destination that I realized, “holy crap I am SO high right now and should NOT be driving”. I pulled into a parking lot and had my friend pick me up. This feeling lasted till the mid afternoon! 

When I got home I looked at the bottle, my original prescription was 1-2 every four hours!! WHO COULD SURVIVE THAT?! 

Never again – I went back to just suffering through the pain. 

So, this story is not even the main reason for this post…. I will have to write an “addiction part two” tomorrow. 

But to finish off our discussion about oxycodone – or just any pain reducing drug for that matter. BE CAREFUL. The doctor will prescribe you what is the standard dose, but LISTEN TO YOUR BODY. Do not just read the label and pop away, see what works for you. I am not advocating to never take a pain pill. Tolerances for pain are different for each individual, and if you are in too much pain then that will actually harm your healing process. All I want to make known is just to be aware of the problems that can come from taking pain killers. It may help with your pain but it may be hurting you in some other way. These drugs are strong so please use with caution. 

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.

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.