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?

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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. 

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.

Unknown

Since I have been home from the hospital, I have gone through my usual routine of being a hermit – or so I thought. Usually after any of my surgeries, I spend a lot of my time recovering quietly. Sure, I will go out the odd time, but always try not to make those times too social. I am never interested in talking to anyone – I just enjoy the peace and quiet. So this time I have been the same way, except I should be starting to turn the corner by now. I have been in a “funk” emotionally for the past few weeks and could not figure out what was wrong. At first I thought it was the recovery process, and then I thought maybe it is the stress of the wedding. Both of those do play a part in the way I am feeling, but they still were not enough. Yesterday I finally broke down and figured it out. I’m entering into a world of unknown. I have been here before, last summer to be exact. I had a successful surgery and entered into the “monitor” stage, only to find out after my first scan that everything was back. So this time I do not have the same delusions in my head that maybe, just maybe, I have finally beat this cancer shit. After my post op this week I just am left to sit around until October when I will have my next scan. It weighs so heavy on my mind.