Unraveled

These past two and a half years have been go, go, go. My day to day focus was usually about preparing for something coming up. Whether it was a surgery, chemo, whatever. I’ve always been told by others that they are surprised how well I am able to hold it together. They weren’t wrong, for the most part I did have it all together. Now I just feel completely unraveled. It is almost like being sick was in a way, easier, because it was physical. I had a focus, where now I don’t. Everyday I have a fist full of sand that is just leaking out of every crack and I am just struggling to keep it all intact. It feels like an impossible task. 

I have learned along the way to fake it pretty well. So I’m not sure most would even think anything is wrong. In a social setting I can handle myself and can speak and act as if everything is just fine and dandy. Inside however, I feel black and cold. Every day I feel alone and trapped in this hole that I can’t get out of. People can say they understand, but when it comes down to it, they don’t. All the depressed thoughts have been pushed aside week and week because I have had bigger things to focus on. Now everyday each little thought pops out of its hiding spot and adds to the pile of shit in my head. 

The wedding is just a few weeks away and I am trying my hardest to pull it together. I thought the planning of it would take my mind off of everything else, but in fact it makes it worse. Every little detail and stress makes me want to pull more and more away. 

I’m sure it won’t be like this forever. But just a day of it feels like an eternity. 

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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Port Advocate

When I see the hospital calling I always assume the worst. For the first time in a long while, this call was only good news. Let me back track before I get into my conversation with Dr. Jay.

During my time in the hospital for my first two surgeries in 2014, I was a human pin cushion. I had IV lines coming out of every vein they could tap. My hand, wrist, and arm were all covered with lines that weren’t even hooked up to anything. They were all there “just in case” they were needed. On top of this, I was still bothered once a day by a nurse, who would poke at me to take my blood. Worse even still, were my constant arguments in the ICU over a picc line. (If you are not familiar with this term, it is a tube they insert and leave open in your veins, so they have direct access to your blood.) I would fight tooth and nail with every nurse that came in to inform me that they were going to put one in. “Why do you need to put one in, I have a PORT!” The first time my yelling worked and I was able to keep them away until I made it to the surgery ward. The second surgery, I was not as successful. I had three nurses hold my arms down, while a male doctor cut into different parts of my hand and arm trying to start the line. I was crying the whole time and begging them to stop. After trying in four different areas, they were nice enough to give me a break. (This sentence couldn’t be any more sarcastic.) An hour or so later a new nurse came in to let me know they were going to try again soon. I cried and said, “Please just explain something to me. What is the point of me having a Port-a-cath if it is not going to be used? The whole reason I had it implanted is so I wouldn’t have to get a picc line. This doesn’t make any sense!” She surprisingly agreed, and then proceeded to call off the picc line.

Side note: While driving the other day I thought about this moment, and I cried underneath my Raybans. I wish my memories in the hospital could all be erased.

From my weight gain in the winter of 2014, I developed a lot of extra fat on top of my port. This made it really tricky to access. So when it came time for my surgery in 2015, I did not bring it up.

When I met with Dr. Jay and Dr. Ko this year to discuss my May surgeries, I was quick to touch on this subject.

“Can I ask you guys something? Why the hell am I poked at everyday – which hurts by the way – when I have a bloody port? What the hell is the point of having this thing if every nurse I speak to, other than the ones in oncology, don’t know how to use it?”

“You’re right.”

WHHHAATTTTT!? This was the first and probably last time they will ever tell me I am right. Even though I have been right SO many times before, and will probably continue to be.

“It is a little tricky to explain why they are not trained to access it. However, I will make sure this time it is used.”

To my surprise, they kept their word. For both my surgeries in May, my port was used. I was administered all of my drugs through it, and all of my blood was taken from it. No more tube city!

Which brings us to today. Dr. Jay called and asked me if I wouldn’t mind speaking about all of this to a colleague of his in the hospital. Since I was such an advocate for myself during all of my hospital stays, it started a movement. Nurses are now starting to be trained on how to access ports. A woman is putting together a proposal for more funding, in order to be able to have the supplies and training needed, so all nurses will know how to use the port to their full advantage in the future. I obviously said yes right away. If I can help prevent future surgical patients from having to experience what I have been through, I am all for it!

I will also request to have it called “The Jamie Protocol”. Just kidding……… not really.

 

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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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Oh She Glows

Eating out is so much easier than cooking. That is probably one of the main reasons I got into this mess – I was the queen of fast food. Even though I no longer spend my days in a drive-thru, I do still eat out a lot. With my kitchen renovation complete, I thought this would be the perfect opportunity to actually use it. For my birthday I received the Oh She Glows vegan cookbook by Angela Liddon. I have heard the recipes are easy to follow and that the food is AMAZING. So let’s give it a shot. For the next little while I will be trying to make one dish a week. I will post my progress on here so you all can follow along! This will also hold me accountable so I can’t just run out and grab a pita. Maybe I will actually enjoy this? I will get started after my next surgery (which is July 5th). My food will become my new drug since I am not being put back on chemo right away.

 

 

 

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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Black Out

No, this is not about to be a hilarious story of some drunken antics I got up to over the long weekend. And for the record, I have never been “black out drunk”. So to all those friends who over the years I said, “I did what? Oh I don’t remember at all” – that statement was a load of bull.

My first surgery of the summer took place on May 2nd and was quickly followed by a second on May 4th. I called my fiancé on May 8th and to my surprise (and apparently also his), he said “Oh hi – Wow you sound like yourself today.” Um sorry? The weird thing about blacking out in the hospital is that you do not realize you were until it is all pointed out to you. It still hadn’t hit me yet that the past week of my life was all just a blur. A few days later my mom was visiting after work (as she did everyday) and said, “Oh you were so mean on Saturday. You were yelling at me and told me to leave and never come back. I cried to your father about how if this was your new personality, I don’t think I want to take you home.” How horrible is that? I felt awful. I can remember pieces of that week, mainly just the painful things. I remember having to flip on my sides for my sponge bath, and how painful that was. I remember HGTV always being on the television. I remember the day I hallucinated and screamed out to my nurses that I must have a fever (which I was right about). I know one afternoon I was screaming out in pain and begged anyone who would listen to me to make it go away. Besides those few things, I don’t remember much else. 

I asked around and have been able to figure out what I was saying and doing for those days. Here are some stories I was told:

“One day you wanted to pull out the line going into your port. You were so angry when we tried to hold you down and stop you from doing it.”

“You thought I had your phone in my purse and began to throw everything out of it screaming at me to give it back.”

“The tv stopped working and you lost it.”

“You thought I had cookies in my hand and kept reaching out to get them.”

“You thought I had doughnuts and wanted them.”

“Everything on your lunch tray you wanted to put in your coffee cup. Then you got mad when we wouldn’t let you.”

“You walked the halls of the ICU with your catheter, epidural and chest tube in – somehow in no pain.”

“Anything you tried to do you would fall asleep after 20 seconds. Mid sip of a drink – asleep. On the phone – asleep.”

“We were concerned with how out of it you were. We thought you would slip into a coma in the night.” 
Sounds fabulous. 

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Summer 2016

Things to look forward to:

Brand new kitchen, powder room, front door, flooring, coat closet, wall paint, light fixtures, screen door

– Main floor makeover

– 30th birthday 

– Summer weather

– Jack & Jill

– Best friends wedding

– Wedding shower

– WEDDING (September 10th by the way)
Things I dread:

– Every day and night spent in the hospital

– Pain

– Not being able to sleep comfortably

– Missing the pup for 2-3 months

– Sleeping alone for 2-3 months

– Pain

– Chemo

– Losing my hair just before the wedding

– Gaining weight from steriods just before the wedding

– Being bald and fat in all of my wedding pictures

– Pain

– Unable to walk the dog until the Fall

– Feeling alone

– Not being able to drive 

– Pain
 

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Beachside 

Two years ago today I announced my diagnosis with cancer. What a different week this has been than compared to that of 2014. Crying everyday, in and out of doctors offices – but this past week I have been relaxing beachside in Jamaica. I know my doctors never thought I would be sitting here today – myself, not so sure. 

Now that this life has become my constant, I can begin to reflect back on the innocence I once had. I was so scared but confident I would kick cancer in the butt. I had a lot of anger and would sometimes take that out on people close to me. Some of those people understood that my mind was so fucked up I couldn’t control it – and they stuck around. For that I am forever grateful. Others were not as strong. When you enter into the “chronic disease” category, the life around you shifts. Some people rally behind you and say things like “Don’t worry, I am in your corner.” But as the days and weeks turn into years, some of them slowly take off their gloves and step out of the ring. They too are exhausted from supporting the constant fight. It is very difficult for me to watch people one by one drop their gloves, but I am starting to come to peace with it. I too am exhausted fighting, but I don’t have the option to back out. I must keep going. Round after round I await for the judges to announce their victor, but it never seems to happen. So I wipe my brow, pick up my gloves, and get back in the ring. 

As I reach the end of my vacation, the reality of what is to come starts to set in. Tuesday I will have another scan to determine how my summer will be. There is no “winning” option, so I am not sure what to hope for. The fighter in me says surgery. Cut and conquer. Surgery will hopefully buy me some time for a much needed break from treatment. Just once I would like to have an appointment where they say, “Your scan is clear. See you in three months.” 

The warm breeze blowing across my body right now reminds me to take the time to appreciate what is in front of me today. Maybe three month breaks are not in my future – but today I am happy. Today I feel strong. So today I will enjoy my last day here and try not to worry about what is to come. 

  

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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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