Tag Archives: chemotherapy

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. 

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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. 

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The New Plan

If you are reading this and wondering how my surgery went, I apologize. I was called by my surgeon 3 weeks ago and told that he had to bump me. There was a patient he had who has a more complicated problem and needed my time slot. So my new surgery date is July 5th. I have been asked a lot, “How do you feel about that?”. Truthfully – I feel fine. I’m confident my surgeon wouldn’t have chosen me to move if he did not think that I would be ok.

The other interesting piece of information I found out recently is that I will no longer have to go back on chemo. During my post operation appointment, Dr. Jay let me know that after my last lung surgery I would be put back on chemo, particularly Oxaliplatin (or Eloxatin). This is the drug that is used in the FolFox treatment. I spoke up faster than he could finish his sentence and let out a big “Hell no”.

If you want to know why I was so fast to react – please refer to my posts in October 2015.

Dr. Jay was quick to respond and let me know that this was the only drug which is proven to work with cancer that has not yet formed a tumour. But my answer was still no. I am one of the rare people whose bodies cannot handle this drug. I told Dr. Jay that my oncologist would back me up but he wasn’t hearing it. I get it – I am known to complain about being on chemo because I hate it. So I assume he just thought this was me being dramatic. Jokes on him.

A few weeks ago I met up again with Dr. Jay and he let me know I was right and he should just listen to me moving forward.

Just kidding.

What he did say however is that he had a meeting with my oncologist and THEY decided that I cannot be on FolFox. It does not react well with my body and it would do more harm than good.

Oh reaaalllyyyyy???

So – no more chemo for me this summer. This news is amazing because I really didn’t want to be sick and bald for my wedding in September. I am slightly worried however. I have been off chemo for this long before and just exploded all over again with tumours. So I am being cautiously optimistic. Not one of my doctors is saying, “After this next surgery you will be cancer free and we will never see you again.” Actually what they have said is, “This most likely won’t be the last operation you have – just so you know.”

Cool.

 

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Surgery Round 4, 5, and 6

Yes, you read it right, I have three surgeries coming up. My scan results left me again feeling uneasy. A met on my lung and a met on my liver have showed a slight growth. Not anything that is majorly alarming, however my surgeons are concerned. Since the chemo has only been out my system for three weeks, this is too fast for things to already be growing. So yet again, they are scheduling me for another CT scan. If that scan shows growth again, then all surgeries are off and I get hooked up to the lovely chemo cocktail. If they stay stable, I will be operated on starting May 2nd. This one will be for the four on my upper right lung. Thankfully this surgery can be completed laparoscopically so I will only have three small incisions. Following this surgery on May 4th, they will perform my liver surgery. Unfortunately Dr. Jay has decided not to use the same abdominal incision he has accessed twice before, but will open me up down and across the right side of my upper abdomen/lower chest. From what I have heard, recovery from this incision is much worse – so I am totally looking forward to that. If all goes well I will be in the hospital for a total of 2.5 weeks. Shortly after I will have yet another CT scan and if that again shows no new growths, they will perform the lung wedge resection on my left side in mid-June. This side is a tad trickier, so he is planning for laparoscopic however it may end up having to be a larger incision.

So the week of my 30th birthday, after my scan, I will either find out that my cancer is WAY more aggressive than anyone has imagined and my surgeries will be cancelled – or – my body is about to endure a shit ton of pain with the hope of a successful outcome. 

Again, all of the same worst case scenerios have to be spoken about and signed off. Obviously as with all surgeries there is a chance of complications, infections, liver or lung failure, yadda yadda yadda. The one that always worries me more is the increased chance of reoccurance. Weakening my body will just give the cancer all the ammo it needs to get stronger and maybe multiply again. Even if everything goes as planned and nothing grows, six weeks after my third surgery I will be right back on chemo for “maintenance”. It is a never ending rollercoaster. 

So to sum it up, on my 30th birthday on April 30th I will either be upset at the fact that my cancer is being a little bitch and growing, or be upset at the fact that I am about to endure a fucking awful summer of multiple surgeries. Happy Birthday?

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The Plan

I’m not sure if it is so much a plan, but more like a “choose your own adventure”. 

Sitting with my surgeon and my oncologist they both let me know I have options, and here are the main two:

– Have surgery in the Spring/Summer 

Or

– Have surgery in late Fall

Without typing for days and boring you with all of the little details, the way I read those options are:

– Less chemo

Or

-More chemo

As you may know by now, man do I hate chemo – so you can guess which option I am going for.

So what will this entail? Well I will have my lovely mid section sliced open again to access my liver. Totally cool. Oh and I will have both lungs operated on. Double chest tube! I am PRAYING that they say I only have to do two more rounds of chemo and then I will get my pre-operation break for all of March and April. However it is more likely that they will push me to do chemo right up until 6 weeks before my surgery. 

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Living

I have never been so sick. The chemotherapy I received last week did a number on my system. I felt extremely nauseous, weak, and dizzy. I could barely manage to swallow my anti-nauseous pills without gaging over a bucket. Something was and is not right. My new clean diet was just getting on track before my treatment. I was feeling so strong and like the person I knew before all of this ever begun. Yet now here I lay, on a couch, for days on end. Trembling over a slice of apple while crying because I just want it all to go away. I am my only advocate. I do not care if this new chemo I am on can sustain my life for 5 years (They haven’t said that by the way). What is 5 years living on a couch? That is not living, that is just surviving. I want to live. I want to be able to do everything I have always wanted to do and more. I want to be able to enjoy the company around me and feel the fresh air as it enters my nose. I want it all. This new drug is limiting me. It is a very hard choice when deciding what you should do when you are dying. I will not be able to please everyone. Heck, I may not please anyone in the process. At then end of the day I am only worried about myself. If I feel good then that is all that matters. It just does not make sense to me to go from feeling 100%, to poisoning myself to the point where I can barely move. I am not saying I am giving up on chemotherapy, but I am definately saying a firm “no” to the last drug that was pumped through my veins. 

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FolFox

My chemo in the past I used to look forward to at the beginning. Knowing the cancer is in my body, I wanted to start the poisioning process as soon as possible. This past week was very different however. I have been feeling so good and so strong all summer, that I knew this was not going to be fun. If I do not have many years left I want to be able to live them, not stuck on a couch feeling so sick. I found out on Wednesday that FolFox (unlike Folfiri which I was on before), cannot be taken biweekly for life. The side effects are much more damaging and I have to have breaks built it. The amount of options I have are slightly overwhelming. Here are just a few scenerios:

– Take Folfox for 6 months, and then have a 1-3 month break

– 2 months on, 1 month off

– 3 months on, 3 months off

– Do not take Eloxatin, and just have Fluorouracil

– Take a lesser dose of Eloxatin

As you can see, it is very hard to know what is right and what will work. I will have to trial and error to find a balance between what works against my tumours, but what also does not make me a couch potato.
Now, let’s discuss this fun new drug called Eloxatin. It has the common symptons one would expect with chemo such as mouth sores, nausea, diarrhea, vomiting, change in taste, fatigue, nose bleeding, etc. The fun thing is about chemo, you should fully expect to have all of these side effects. This list usually is not a “you may experience” and more of a “you will experience”. All of those I dealt with last time. The new fun one this drug brings is called Neuropathy. It is nerve changes that can cause tingling or numbness in the hands and feets, muscle weakness, or other altered sensations. This can hinder the patient from being able to even button up clothing, and can become permanent. The most common trigger of neuropathy is exposure to cold. So with the drug they actually provide the patient gloves. Not for the Canadian winters, but just to go in the fridge. Any time I need something from the fridge, I have to put on gloves. The nurses also warned me that I should never eat or drink ANYTHING cold. Having a cold substance can make it feel like my throat is closing in and simulate suffocation. Oh fun. This means everything must be consumed at room temperature. No cold drinks, fruit, veggies, yogurt, etc. How fun is this right? With the winter coming I have to wrap a scarf tightly around my mouth and nose to ensure I do not breathe in any cold air, as it will cause the same effects. On top of all that, it can also cause temporary vision loss.

So my last thought on all of this is – stop complaining about your regular lives. 

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Body Transformation

I know I have spoken quite a bit about the changes in my body – but I am a girl so obviously this is a major issue for me. When I first learnt I would be on chemo for about a year, I thought like most people do – weight loss central. This however is not the case with all treatments. Yes, there is that stereotypical look of a chemo patient with no hair who looks like skin and bones. Then there are the people whose drugs react in the total opposite way – like myself. My drugs not only cause me to never have a full feeling (that’s right, I can eat for days and never get the sense I have had enough) – but the steroids have also caused some serious ballooning of my body.

The stomach was an obvious stand out at first because, well, it started standing out. Then I noticed my thighs had a few more bumps than normal. The shirts I would try on at the store went from medium to extra large – and even some of those looked too tight. I went from my skinniest after surgery to my heaviest in a matter of months – and there was really not much I could do about it. I knew the steroids were causing my face to swell – but until I did a side-by-side photo – I did not realize how much.

image

Yes, I understand that gaining weight is much better than losing. I did not expect to be going through this and also look like a supermodel the entire time. As a young female however, our looks are still important to us. Well not even as a young female – I would say as a female in general. Heck, even some men would probably have a tough time with this. The scars I could care less about – but looking in the mirror and seeing back rolls (yep, thats right, I now have back rolls) – was more than shocking to me. If I haven’t said it enough, I am ever so thankful to have such a strong support system. They really come in handy when I am having a “nothing fits me” kind of day. And yes I know at the end of it all, a little weight gain in order to save my life is probably a fair trade off. I think I need to put that into perspective a little more.

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Have vs Had

At what point in my journey can I use the phrase “I had cancer”? Is there any specific time that you can switch a “have” to a “had” when you have stage 4? Since the cancer cells in my body are just floating around like dust particles, I wonder if I will ever be able to speak of cancer in a past tense. If I forget about the microscopic cancer cells and just go by what we can see, can I use the term after my first clear scan? Or do I have to wait till that all coveted 5 year mark to finally say, “I had cancer”. Even when that time comes, is that a description I would want to define myself? I am so much more than this disease, but yet it seems to be in the top five of words used to describe myself these days.

Having a “planner” personality it is very difficult to throw all of my papers up in the air and just let life unfold as it may. I am always looking years ahead but now I find myself only being able to plan 3 months at a time. Right now I am not even sure what will happen next month as my next body scan is January 27th. That will determine a yay or nay to surgery on my lung. However if that scan is clear then in February, am I stepping into the “had” zone? Maybe it is when I am off chemo and all I have is scars as evidence of my battle with cancer. Maybe I should stop thinking so much.

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Chemo Sucks

Well I can finally say I understand what chemo is really like. It started at around 12:00pm yesterday when I began to feel the full discomfort from the drugs. I was hot and cold at the same time and extremely nauseous. Thankfully I had a good friend by my side who consoled me while I shed a few tears (or a lot, but who’s counting). Coming home it only got worse. The nausea persisted and even made me physically ill throughout the night. If this adventure couldn’t get any more fun, I received a call today from my nurse that my oncologist is putting me back on the daily injections for white blood cells. Oh, and they are refusing to provide me with and at home nurse even though I explained in detail how bad my anxiety was last time.

This next step in my journey I can already tell will not be fun. Who would have thought after two invasive surgeries that it could get any harder. I know the overall thought is – it has to get a little harder in order to be better on the other side. But that is easier said when you are healthy and don’t feel like shit. So those happy people who I know are saying it to be nice – can screw off for now. Sorry.

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