Monthly Archives: June 2016

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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