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.

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. 

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.

Car Rides

My focus for a long time now has been to build back up my physical strength. I go on long walks, try a few sit ups here and there, and swim in my parents pool whenever I can. Physically I am beginning to feel stronger. Just when I start to pat myself on the back, I remember that I am leaving a major part of my recovery out – my mental and emotional strength. It is like I have been doing all upper body exercises, but my legs look like chickens. Driving alone in the car seems to be the worst time for me. It is when my mind runs all over the place, and I always end up crying. Good thing for sunglasses. I need to start shifting some of my energy into helping to heal this crucial side to my recovery. But how? Group therapy sessions help, and I do attend them, but I beginning to realize I need more than this. I have to find an outlet that allows me to be able to be alone and one with my thoughts – and still be ok. This is a harder task than it seems. As soon as it is quiet, the little voice in my head starts to say, “You have stage 4 cancer. How many years do you have left? That sharp pain in my side, is it cancer? So what if you don’t make it to forty, who needs to be forty? Why do I have to go through this? Fuck you Taylor Swift, you don’t even know my struggle.” (She’s always on the radio.)

Cancer In The News

A few nights ago I was wide awake late into the night (this seems to be a reoccurring problem for me, stupid brain will not shut off) – so I hopped on the good ole Facebook to see if anyone read any interesting articles lately. I came across one about a girl who was on a reality show on MTV, who just passed away from cancer at the age of 32. I thought to myself that it would probably be a bad idea to read this, but went ahead with it anyways. Dumb. She went into remission two or three times before the cancer won the battle. I of course, immediately related this to myself and became a blubbering mess. 1:15am and the call went out to a friend – “Talk me down from this.” – I begged. Lucky for me she stayed on the phone for the next hour until I was finally ready to try falling asleep again.

Conclusion? I need to stay away from articles like this.

Conclusion #2? Why does every article or news story always seem to be about the diagnosis and death related to cancer. I never seem to come across a posting about hope and happiness. Someone who was diagnosed as terminal or with stage 4 or whatever – and is still alive years later clean and surpassing all odds. Of course this does not make for as juicy of a story then scaring the population about the horrors of cancer. There are probably a hand full of news stories out there with good news, but there is no way I am googling it and cyphering through all the bad shit.

Next Goal? Other than the fact that every birthday from here on out will be a huge celebration for me – Live to forty and force a news company to run a story about hope. Even though I do not want cancer to define who I am – have this story to be all that my life ends up being about. Telling it over and over and having it control me for years. It is hard to deny that it has changed me – as well as the people close to me. I have seen it as a beacon of strength. When you thought you were already a strong person – it has forced you outside the box of comfort and shaped you into someone you may not recognize. That is what it has done for me at least, and for many of my close relationships. I have seen people change right in front of my eyes. They have become a better version of themselves by helping me through this shitty experience. Hopefully years down the road with can laugh at this whole thing, but also maybe in a weird and crazy way be thankful. Being at your lowest of lows can also provide you with the greatest highs.

The Challenge

Two days after my diagnosis, I was sent to St. Joseph hospital to meet with my surgeon who would now be looking after my case. My doctor walked in the room and sat down with a picture of a liver. He began to explain the different quadrants of the liver, and how he needs 20% healthy liver tissue in order to operate. As he placed the cartoon depiction of the liver on the table he pulled out his pen, and the circling began.

“You have multiple mets on each section of your liver. At this time we are not able to operate. I will be honest with you, it is very rare in cases like yours I am ever able to operate.”

My mom, my dad and myself all cracked. He let me know he wanted to start me on chemotherapy right away. He set me up with an appointment to meet my Oncologist, as well as my day surgery for my Port-A-Cath. This was all going to happen in the afternoon. I started having a meltdown and asked everyone to leave the room

“So, now I am really going to die.” – This was the first thought that had entered my brain. In that moment I reverted right back to a child like state. I got up from my chair, climbed up on the doctor office bed, and laid down in the fetal position crying. My doctor returned to check in on me and we began having what I like to call “real talk”. It was during that conversation something came over me. This feeling of determination, of not wanting to be a pussy about it. “Suck it up, stop crying, get on with it.”, I told myself.

I sat up, wiped my tears, looked him square in the eye, and gave him my challenge – “I challenge you to a surgery. You will be seeing what my liver looks like within the year. Year and a half tops.”

“Ok Jamie. Challenge accepted.”