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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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. 

Food Poisoning

Well this was a first that I do not welcome into my life ever again. And here I was thinking that throwing up on chemo was bad. Oh no – food poisoning is like no other. I am pretty positive that is what was wrong with me- although the doctors have no way of proving it. It started at 3:30am and was every half an hour until 4:00pm. Right around 1:00pm I realized I couldn’t take it anymore and was becoming weaker by the minute since I couldn’t even keep water down. Now that I know the hospital system so well, I knew emerg would be my best course of action. I needed an IV of fluids stat. Off we went – on Chris’s birthday too – poor guy. 

I always have to be upfront with the nurses and doctors at the hospital right from the start. Let them know I do have stage 4 cancer and I just came off of chemotherapy. I know the drill. My immune system is compromised and no one can risk leaving me out with all of the sick patients for too long. We waited approximately an hour or so and then were shown into our own room. 

From here I thought it was going to be easy, hook me up with some saline and then ship me off. Wrong. I always forget how much weight my disease carries. Food poisoning was their best case scenario, and they were starting at the worst – that this whole thing was cancer related. It didn’t even dawn on me once that that is what could be the issue. The doctor wanted to run multiple blood tests and a urine test to rule out any sort of infection. Even my temperature being only two degrees higher than normal had them concerned and they began monitoring that – which was super annoying because I was freezing and was only allowed a thin sheet. 

After being at the hospital for 7 hours now, the tests results came back fine – and yet they were still concerned. If I wasn’t scheduled by my regular doctors for a CT scan the following week, they would have ordered one for me that night. It is fantastic that our health system cares so much for patients like myself – I guess I better start taking my disease as serious as they do. I know it is horrible, but I never think that every single time I feel sick it may be cancer related. I mean I guess I should? But who really wants to live like that. The ER doctor gave me the option to stay over night so I could be monitored. By this point I was able to keep fluids down for the past two hours. I opted to go home but promised if I was sick one more time either that night or the next day, I would come right back. Too bad they don’t have a test to prove it was food poisoning, would have been a much shorter trip. 

Scan Results

What is beginning to become fascinating to me is watching the way different people react to the same news. What is the news you ask? My latest scan reveals that the little shit on my lung decided to camp out for the winter. He’s small and insignificant (like most men – right ladies) – but still sticking around. The rest of the organs however are all clear – even the liver. That’s right, after removing over 30 tumours from my liver I am lucky enough to say that none of them have grown back. (Yet? I feel like I can’t finish that sentence with such a strong point. It is as if I am daring them to resurface. I’ll knock on wood.)

The plan now is for me to finish up the chemo (last day is April 1st – Aprils Fools Day – how fitting), and then surgically remove the last remaining morsel of my cancer in May. By end of May my surgeon has stated, “I am looking forward to giving you the news that you are cancer free”.

The scan results have caused a multitude of reactions – which I will now break down the most common:

Criers – People who cannot believe that my liver is clear and I am almost cancer free. They stare into my eyes with amazement as to why I am also not crying and smiling from ear to ear.

Skeptics – People who think the “cancer free” statement is a little too soon. Let’s just hold off throwing around that term until there is actually a clear scan.

Questioners – People who after every statement I give them follow up with a “And how do you feel about that?”. These conversations are the longest.

Neutrals – People who stay in the safe zone. They gage their reaction based off on the way I am speaking. What ever emotion I display, they mirror.

Drumroll for what category I feel I fit in to…….

All of the above. Well I haven’t cried, but I can understand why some have.

My perspective? Going in to the appointment it never crossed my mind that my surgeon could say, “Your scan is horrible and you are covered with tumours.” Did I know that was a possibility – yes. We had discussed that was a major risk from my back to back surgeries. I guess I was so focused on my lung results that I did not focus my energy on to thinking the absolute worst case scenario. So now my thoughts on the appointment are – Ok, five more bloody rounds of chemo and then another stupid surgery. Yes I know it is less invasive than my other two (you are not the first person to point that out) – I am not concerned about that. If you recall in the Fall I even asked my surgeon to just operate so I could stop worrying about that sucker. This “go get’m” attitude shifted when my surgeon dropped the words – chest tube. To take precautions after my surgery to ensure my lung is inflating on its own, I require a chest tube for a day or two. No thank you. I feel like that should be up for negotiation – which I made clear to my new chest surgeon. He does not understand my personality yet so he just stood there dumbfounded that I was even trying to make this into a debate. My liver surgeon stood by his side, leaning up against the table with his arms crossed. Body language to me, from him, was reading – Yep, typical Jamie. Always trying to negotiate her way out of everything.

You’re damn right. My last statement to my new chest surgeon was – “This chest tube thing. That will be up for discussion at our April appointment.” I will probably lose.

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.

Live At Emerg

Going to the emergency room at the hospital is always a last resort. No one likes to go there. You sit and wait for hours surrounded by people who are hacking a lung or throwing up in a bin. With my body being so problematic these days, anything we are concerned about has to be seen by a doctor right away. This urgency has increased ten fold since I have been home from my surgery. Since my surgery was so invasive, if there is anything wrong post-op it could mean something has gone wrong with the surgery. This past weekend I have been to the emergency room 4 times for my wound opening up, back pains and stomach pains. An interesting fact that I learnt was, no hospital will touch a surgical wound if it was not performed by them. This makes sense because they do not know my case in depth and do not want to harm another surgeon’s work. My question is – Why does the triage nurse not tell you this? I could have saved 2 1/2 hours of my time if they had told me this while registering. Water under the bridge now, but still quite frustrating.

Last night the doctors asked me to stay over in order to monitor my pain. Overnight stays are not my favourite, but what came out of this was another CT scan. I was able to see my surgeon afterwards and he let me know that my scans are showing a slight improvement. My liver seems to be slowly responding to my surgery – Yay! He is also now loosing planning to have my second round of surgery for end of September. This is great news but now I am also dreading it. I have not been having fun post-op and all I can think of is I have to go through all of this again. I really should not be complaining, as this surgery is helping to prolong or even save my life – but still.

Needles

My two biggest fears are needles and spiders. Leading up to my diagnosis I was stabbed so many times, my arms were bruised like a heroin addict. I used to squirm and cry each time, but I never thought I would become this comfortable. Needles used during my chemo have stopped making me feel faint and crying over (only the first time). I still cannot look when they take my blood or put the needle in my port, but at least there are no tears.

My last visit to the hospital they warned me that my white blood cell count was dropping too fast. To sum it up really quick, chemotherapy kills good and bad cells… my good cells were not reproducing fast enough. I had to be placed on daily injections for 8 days in order to help with this. I did not think anything of it at first, I have become a needle pro. Then they told me the real kicker to this whole thing, I have to administer the needle myself. I instantly said no, not possible. After much persuasion from the nurse, she assured me that it was very easy and 99% of her patients do it themselves. I was booked to come in the following week to the hospital for my first one.

Of course I was nervous, but I was trying to talk myself down from it.

“Diabetic people have to do this everyday… I can do this… ”

As if this adventure could not get any more fun, I had to draw the drugs from the vial myself. They taught me, let me practise and then said “go”. I took the needle off… drew from the vial… tapped out the bubbles… cleaned off the injection site on my stomach… and then sat there. Needle in hand I began to cry. How was I ever going to actually proceed with the motion needed in order to stab my own stomach with this needle? My mind was racing. My mom and friend were there for support, cheering me on. Finally… eyes closed.. one, two, three… I stabbed my stomach. Not the worst. Now I had the task of switching my hands and actually slowly pushing the drug in my stomach. Nope. Anxiety attack full swing… pass out mode engaged… the nurse had to take over.

Day two I had a nurse come to my house to be here in case I needed help. I was nervous but I tried to pump myself up. My pump up worked and I was able to do it from start to finish with no tears. Success!!!

Day three I began to draw from the vial and I noticed my needle was leaking. I started freaking out but the nurse again was here, and stepped in to help. I lost some of the medication so we opened a new vial, and drew the rest from that. My heart rate was up slightly from the set back, I took a deep breath. One, two, three… jab… except the needle just pushed my skin in and did not pierce. Annnnddd the anxiety came right on back. Heart rate up, tears flowing, the nurse took over.

Day four…. starts in 2 minutes. Wish me luck 🙂

By the way, needles is one thing. If you are afraid of them like I was, I am proof you can get over it… kind of. Spiders on the other hand…. If they told me I had to hold a tarantula everyday in order to feel better….. that’s a big cup of “nope”.