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?

Cancer, party of one

Where do I even begin? (I just finished this blog and apparently I had a lot to say. So grab a coffee and a comfortable chair)

My whole plan when I took a break from blogging back in the Fall was to pick it back up after my scan in March. I had this idea that I could share with all of you my amazeball results of my first, second clear scan and then I could FINALLY share what I discovered my passion to be! Of course that fantasy is just that, a fantasy, and the reality is life never seems to be that easy.

I’ll share my passion another time…

For now, I’m just going to share what has been going on in these last few weeks.

My scan was on March 15th and it was a typical scan day. Drank the crap, joked around with my CT tech, got the IV, scan scan scan, then drank litres upon litres of water for the rest of the day to flush out my kidneys. Normal shit. The only change to the whole routine came with the delivery of the results. Back in the Fall I asked my surgeon if he could save me a trip to Toronto and just call me with my results. He agreed. So later that afternoon he called and said the following;

Liver and lungs – clear

Right ovary – unsure, needs more testing

I’m sorry what? Did you just say now I have to worry about my god damn ovaries?

He proceeded to ask about when my last colonoscopy was, how have my bowel movements been, when was my last period, etc etc. Then he let me know he was off to Whistler but I would be getting an ultrasound appointment in the next two weeks. Perfect.

Then my brain entered into rapid fire mode. It was dissecting every word and pronunciation he said and trying to figure out what the underlying message was.

This is what my brain told myself in less than a minute:

When they were first diagnosing me they told me they thought I had cervical cancer that had spread to my liver. So that means that scan showed the shadow in my colon but then thought it was in my cervix. So this one must be showing the same thing and that’s why he’s asking about my last colonoscopy. That also makes sense because it’s probably just stage 1 or 2 and that can be easily cut out but he doesn’t want to worry me because he’s in Whistler for 2 weeks. This also makes sense because my colon is the only place that when they removed the tumours they did not get clean margins. Yep, cancer in the colon is the logical answer. Or it’s in my ovaries. Or both. Start panicking.

So that was a fun night. The next day (Friday) I received my ultrasound appointment, for the Monday. This further spun my idea tighter around my finger because whhhyyyyy would they book me in so fast!? Yep, shit’s going south.

So that weekend was fun.

Monday comes and my ultrasound tech isn’t aloud to say anything about my exam but does say, “Don’t lose sleep over this.” So that calms me down slightly for the next week and a half while I wait for my next phone call.

The results? Oh inconclusive yet AGAIN. Somethings going on and they can’t figure it out and they can’t brush it off either. My surgeon is frustrated with the radiologist who wants to now send me for an MRI. So he asks if it is ok that he takes me case to the next tumour board meeting.

What is that you ask? A bunch of doctors and radiologists will review cases and give their professional opinion on what they think is going on. It’s actually pretty cool. So of course I agree because why wouldn’t I want more eyes reading my file and trying to figure out the mystery of the ovary.

So that’s where I still stand now. The meeting is on Monday and then I will find out what they said on Tuesday and go from there. Almost a full month after my scan and the results are still slightly unknown.

As you were reading this if you thought, “Well at least it’s just an ovary, you can remove those.” You are not alone. My husband, mother, best friend, and mother-in-law all said the EXACT same thing. And yes, you would be correct, I can lose an ovary. My problem with that is that I am not Swiss cheese. It is very easy now for people just to jump to the surgery idea for me without even blinking an eye. That’s how NORMAL surgery has become for me. This summer will be my first summer since 2014 where I haven’t had any surgery. That is just so crazy even to write.

What you need to step back and think for a second is say this wasn’t a story about a girl who has been under the knife more than she can count. What if this was just a regular ole person? Would your first response from an abnormal scan be, “Oh, well you can just lose an ovary!” Probably not. You would probably be worried or upset and have a tad more compassion.

I am not mad at all at the four closest people in my life jumping to that conclusion so fast. I get it. They are just happy that if it is something, it can be removed – aka non life threatening. But to me, I’m not a cadaver. You can’t just keep slicing and dicing me.

Well I mean you can if it saves my life, but that’s not the point.

The point is, as I have said in previous posts – Every piece they cut away is a piece of me. Literally and figuratively. I don’t want another surgery because I don’t want anything to be fucking wrong with me anymore.

If you are actually in my life and are shocked reading this and are thinking to yourself, “Wow, I had no idea all that was going on.” Surprise! That’s what happens when you go on with your own honky dory life and because I removed the cancer sticker plastered on my forehead, why would you ever think I even deal with matters like this anymore right? WRONG.

Here’s the take away for people reading this who are fighting cancer themselves right now- Cancer is an EXTREMELY lonely disease. The people who rally behind you at first drop off one by one every day longer that you still fight to survive. So YOU have to be the strong one. No one else is there anymore to fight your battles and pick you up when you are down. YOU have to wake up every day and choose not to live in the comfortable dark hole and step into the light. YOU have to remain positive and keep telling yourself that you are just fine. YOU have to put a smile on your face in public and act like nothings wrong. If you solely rely on others to raise you up and motivate you, now’s the time to start finding that voice for yourself. I’m telling you the crowd dwindles fast and when you are left alone, take a minute to be sad, and then pick yourself back up, dust off and continue on fighting.

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. 

Acceptance 

Even though it may seem sometimes I am a Debbie Downer, it’s actually not the case. 


This was taken in Thailand just 30 minutes after I told Chris that I wish that cancer would just kill me so this crapshoot life can be all over with. Can’t you see it in my eyes? I had a LARGE SCALE breakdown. But with a few hugs and some laughter, I was able to pick myself up off the floor and head out for dinner. I thought to myself – I don’t want to feel this was anymore – but then how do I change it? 

I’m not over here though praying to be “cancer free”. I honestly don’t know if that will ever truly happen. What I am trying to do is shift into the world of acceptance.

That is a big world to use. Accepting the fact that I have, and may always have cancer, and that’s ok. This year could be my fourth summer where I have to enjoy it from inside the hospital walls. Learning to walk again in the humid weather. Watching everyone cool off in the swimming pool while I sit on the sidelines. Struggling to find the strength to move from the couch to the kitchen. Maybe that’s ok? If I just learn to accept my disability then it will no longer have power over me. 

So today, that is what I am choosing to do. Remind myself that it is what it is, and I am who I am. And maybe there is nothing wrong with that. 

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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.