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?

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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.

 

Power Port

Sounds like some sort of super hero. Power port to the rescue! – I think I’m still high from the meds. 

Last year during my first visit to the hospital I now call my second home – I was given a port-a-cath. This is not some sort of fancy alcohol, but a device that sits under my skin just below my throat. It gives my doctors and nurses direct access to my jugular vein. This comes in handy when you have chemo every two weeks. No digging in your arm looking for a good vein – I just get hooked right up to the cocktail with a quick stab (or two) of a needle in my chest. This port worked wonders for me for a long time, right up until I began putting on weight. The pocket under my chest wall they created was pushed further and further away from the surface, due to the amount of fat I was gaining. This then proved to be troublesome to every nurse who tried to access it. I also had the kid size version of the port, since I used to be a skinny gal. With my more curvy figure, I needed the upgrade to the larger port. When I received the news I would be on chemo from now until the end of my life, my oncologist thought this was the perfect time to upgrade me to the Power Port. 

What’s the difference? It has a larger area for the nurse to guide her needle into – so it is harder to miss. It also is able to be used for my CT scans for the contrast solution – which means less arm needles. Getting blood taken is easy – I’m talking about the needle they use with a catheter. They always seem to push and pull it around in my arm, that I usually end up dizzy and on the floor. 

Leading up to my day surgery I was calm. I arranged ahead of time with my doctors that I would like to be put to sleep for this procedure. Something that is not common for this surgery – but they remembered me from all my previous visits. No one wants a crier on the table with her arms waving about telling everyone to back off until she “gets the drugs”. 

I walked into the operating room, climbed up on the cold metal table, and started slowly panicking. The anesthesiologist was really sweet and told me a joke while he poked around at my hand. Stupid catheters. There I lay, staring up at the bright lights. The nurse came to put my oxygen mask on, and the tears started trickling down my face. This is my life now – I thought. How did I end up here? This surgical team knows me so well now they are joking around about having “whip and nae nae” play as part of the background music before they push the “sleepy” drugs into my system. 

I awoke in pain, but nothing that I couldn’t handle. Any surgery now is nothing compared to all my others. What was bothering me more however was my left eye. It felt like an eyelash fell it in. I was half drugged up still when I asked a nurse for a mirror to look at. He quickly let me know they didn’t have one. He probably thought it was just the drugs talking – so I don’t blame him. After about 45 minutes I was sent home – and my eye was still bothering me. No less than an hour later after being home, it got worse. The annoying feeling turned into pain and I could no longer keep my eye open. Off to emerg we went. Three hours later I was finally told that during my unconscious state I scratched my eye. Awesome. He sent me home with some gel and let me know it will take approximately three days to heal. Guess who had a sleepless night? They should give patients mittens until they are conscious enough to not stab their eyes out. 

The Challenge

Two days after my diagnosis, I was sent to St. Joseph hospital to meet with my surgeon who would now be looking after my case. My doctor walked in the room and sat down with a picture of a liver. He began to explain the different quadrants of the liver, and how he needs 20% healthy liver tissue in order to operate. As he placed the cartoon depiction of the liver on the table he pulled out his pen, and the circling began.

“You have multiple mets on each section of your liver. At this time we are not able to operate. I will be honest with you, it is very rare in cases like yours I am ever able to operate.”

My mom, my dad and myself all cracked. He let me know he wanted to start me on chemotherapy right away. He set me up with an appointment to meet my Oncologist, as well as my day surgery for my Port-A-Cath. This was all going to happen in the afternoon. I started having a meltdown and asked everyone to leave the room

“So, now I am really going to die.” – This was the first thought that had entered my brain. In that moment I reverted right back to a child like state. I got up from my chair, climbed up on the doctor office bed, and laid down in the fetal position crying. My doctor returned to check in on me and we began having what I like to call “real talk”. It was during that conversation something came over me. This feeling of determination, of not wanting to be a pussy about it. “Suck it up, stop crying, get on with it.”, I told myself.

I sat up, wiped my tears, looked him square in the eye, and gave him my challenge – “I challenge you to a surgery. You will be seeing what my liver looks like within the year. Year and a half tops.”

“Ok Jamie. Challenge accepted.”