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?

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. 

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.

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.

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.

 

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. 

Scan Day

I’m usually not nervous for my scans, probably because I have never had a clear one for a significant amount of time yet. Today’s scan is a little worrisome. If there are any additional growths – they will be calling off my surgeries. I know I won’t be any worse off than I thought I was in the Fall, but now I have started “hoping” again. What am I dreaming about when I lay in bed at night? Going back to work. I know, I sound like a crazy person, but I can’t tell you how much I miss working. I think it is because I am such a goal oriented person. I had so many things I wanted to accomplish in the workforce. I set goals for myself of where I would be at this point in my life – and it is really hard to give those things up. If I am able to go back in the Fall, it will be like starting at square one. I am hoping that I will be able to pick things back up at a rapid rate, but who really knows? I have no idea the greater effects all of the drugs and stress has had on my brain. If you look up the term “chemo brain” it is real. It is something that gets referred to and joked about all the time amongst the cancer community. I am not sure we can fully blame chemo for all of our issues, I feel like the stress from everything that has gone on plays a major role in our depleting brain functions. Unfortunatly at this point it is kind of out of my control. I just have to hope for the best – as I do with everything – and continue on with my day. Listen to me – I am stressing about the effects stress has on myself. Kind of a contradiction. 

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. 

Dilemma

Yesterday was my first scan after my horrible one in September. Since then (as I hope you have read), I have changed many different things in regards to my treatment and lifestyle. Yesterday was the day to see if all that has paid off.

40 minutes before my appointment with my surgeon my mother and I were relaxing in the hospital Second Cup when I felt a pat on the head. Dr. Jay in his scrubs and what seemed to be fresh out of surgery. So now in rough quotes is what we discussed:

“Oh hello! I can just quickly update you now but then I would like to see you next week once the radiologist gives me his report on your scans. They were good, really good actually. From what I can tell they all have shrunk and some have disappeared even. I think there are 4 left on your lung and 2 on your liver? All of them seem to be superficial as well. I want to wait for the report and speak to Dr.Ko, but we might be able to get rid of them for you.”

This moment was mixed – happiness obviously that everything is working, but confusion and another feeling I have yet to name. 

“Surgery? So you can remove them laparoscopicly?”

“Ha ha no. I have hacked at your liver so many times I would need a full visual.”

“So you want to cut. Cut me down my front. Again. For the third time….. I don’t know about this. I was so weak and my body will have to recover and that could make everything worse.”

“I know it is a lot to think about. I didn’t think we would be here again either to tell you the truth. Hell when I first met you I saw your scan I can honestly say I never thought you would be in my office again. But you suprised me then and again you are suprising me today. Let’s be honest. You have stage 4 cancer. I can cut it out and the chance of reoccurance is still high. What this could do though is buy you some time off of chemo, so you can have a some what regular life.”

“If you want me to consider this then next week you better have an amazing game plan. Something like you are going to cut this shit out and then pay for me to go to Jamaica.”

He laughed. “I’ll come up to visit you during chemo next week and we will chat.”

So I am sure most of you are thinking – “YAY! Cut that shit out!” And now I will explain to you in short form (as my mind is running a mile a minute) the dilemma in my head.

Scenario 1: We operate. – I would not only have to heal my front AGAIN I would also have incisions from my lung which would mean a chest tube AGAIN. So how am I sleeping? Not on my stomach, my sides or my back. Even after all that with the shitty recovery, and the drugs I hate being on, and then months of pain, and I have a puppy who will jump and not understand, and the chance of infection, and hospital complications… I will be so weak that it could grow again. So the surgery was for nothing and I’m back on chemo.

Scenario 2: We stay on course. – If some have already disappeared and others have shrunk then let’s just keep me on the low dose of chemo and keep my healthy lifestyle up. It’s obviously working for me and I feel great. But then we know I still have the cancer in me because we can see it. And there may come a point where they stop shrinking, and the amount of chemo in my system will make having a surgery too risky. So now they could grow and get worse.

Scenario 3: We wait for one more scan. – Have a couple more doses of chemo and check back in to see what the boys are doing. Maybe they are all gone now? Or maybe something fucked up happened and they grew weird and now surgery is back off the table and I’m fucked all over again. 

Scenario 4: I somehow convince Dr. Jay who is a world class surgeon, who people fly in to have him use his God like hands to operate – that he is wrong. He can operate laparoscopicly and he just has to figure it out. Go back to the skills lab like I see in Greys Anatomy and make a replica of my liver and figure it the fuck out. This is a pipe dream I know, but you bet your ass I will say this to him on Wednesday.

So as you can see this is just a small picture as to the confusion in my head, and now I have to chose one that is right for me. They can all lead to health and they can all lead to shit. This is my dilemma.