Tag Archives: metastatic cancer

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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Through Sickness and Health

For us it’s more like through sickness and health, and some more sickness, now some health, oh wait don’t forget about the sickness.

When my health is a roller coaster you can’t expect my relationship not to be. Chris and I have to not only deal with our own ever changing emotions, but then also try to tip toe and figure out each other’s. It’s not easy. We decided we needed some navigational help. So we found a couples therapist and have now been seeing her every two weeks for the past three months. What we have discovered is the way we were raised has really impacted the way we communicate and interact as a couple. When I was going through chemotherapy and surgeries it was almost easier for us. Our only focus was my physical health so we had no time to really examine our mental health. Even though I am still physically sick, it is not as noticeable and doesn’t affect our day to day, so now our mental health is disrupting our relationship.

It is a day by day process because our internal issues cannot be resolved overnight. My own mental health changes minute by minute, so if I have a hard time with it how can I expect anything different from him. Going to counselling is not showing weakness in our relationship but it shows strength. The challenges with cancer doesn’t end when you are no longer receiving treatment, in my case it feels like it is just beginning.

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It’s Back

Just when I thought I could start planning my life again, it came back.

My latest scan shows a small spot on my lower right lung. I am trying to look at the positives instead of drowning myself everyday in the negatives.

Positives;

  • It is located on my “good” lung (only one operation)
  • It is not on my liver
  • It is small and easily accessible
  • Surgery is an option

Negatives;

  • I still have cancer

 

But I guess I’ve always known that. It is the message I have been trying to communicate for months now. To all of the hopefuls who exclaimed, “You beat it!” – this is why I was still sad. With stage four cancer, you never really “beat it”. I knew there was a very high chance it would return, and I was hoping it wouldn’t be this fast. So once again I am putting my future life on hold and go back to living one day at a time. Now, it feels like I am just going through the motions. Living in this purgatory state with no direction, just a “see you in April” from my surgeons. If that scan shows minimal growth and no new friends, then operation number seven will take place this summer. There are a million different scenarios that can come into play, but like I said I am taking it day by day. I can and will drive myself crazy if I constantly think of all of the “what ifs”. I have no control over the scan, what I do have control over is my mind and diet. As long as I stick to a clean diet, and try to keep a healthy mind, I am hopeful that I can prevail.

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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.

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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.

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Clear

I have played out this day over and over in my head before. Many nights I would lay in bed trying to fall asleep and fantasize about my doctors saying to me, “Your scan is clear.” I thought last year it was going to happen, and then was crippled by the news that all of my cancer was back. This year I was hesitant. I felt good and I know that I have changed so many things in my diet that are positive, but there was always the chance. Saying I was nervous would be an understatement. I was an emotional wreck in the days leading up to my results appointment. When the day finally arrived I walked into the office as he said walking behind me, “So your scan looks good.” Get out. I was shocked. Even my CEA blood levels were only 0.3! Chris cried, and I sat there taking it all in. In my fantasy I jumped out of my seat and hugged Dr. Jay. I cried and wanted to film it so I could share the “reveal” video with all of my friends. In reality, I just sat there almost faking happiness.

I am happy. I am beyond happy. I need a clear scan to then have another, and another, and eventually stop worrying every day about this damn disease. I know I will never be “cured”. Stage four cancer patients always live in fear. But I would love to have one day in the future where I wake up and think, “Holy shit I didn’t think of cancer once yesterday.”

For now, I’m going to try and forget that January is just three months away, and this blissful life could come crashing down.

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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.

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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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Worrywart

Every little ache or pain I have, my mind begins to wonder – Is this THAT bad? Should I go see a doctor? I’m always nervous to go to a walk-in or the hospital because when new doctors find out about me, they run every test known to man. Here is a breakdown of my train of thought:

So a little bit of pain in my back is probably just a pulled muscle right? Hold on let me google it…. Ok the organ located in that area is the right kidney…. So is the pain from a muscle or is it my kidneys? Well I’m having no problems in the bathroom so it must just be my muscle….. But it is so close to my liver – maybe it’s just my body healing from the surgery….. Or it is the cancer that jumped from my liver to my kidney….. Ok I will just wait one more day and see if it gets worse. 

Here’s another one that also happened this week:

Hmm, my seatbelt is rubbing on my incision site – that’s not comfortable…. Ok where it is has been rubbing for the past few days seems to be irritated – I’ll just hold the belt away from it…. So it’s been a week and the irritation has become larger and now even if my shirt floats by it, I feel like someone is sticking their finger in an open wound – I’ll leave it a few more days…. Hmm my shirt feels wet, oh that’s because it wasn’t swollen it was infected and filled with puss that has seemed to have popped open in the night…. Guess I’ll call the doctor – maybe I should have gone earlier?

I can’t run off to the doctor everytime I have an ache in my body – I would live at the hospital (even though I already feel like I do). However if I leave things and they are something serious, then I am just hurting myself and making things worse. I’m sure I am not the only crazy person out there. 

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