To Port, or Not to Port

I’ve had a severe phobia of needles for as long as I can remember. I like to think it all began when my sister and I were kids and we discovered a tree in our backyard that had long and (surprisingly) sharp pine needles. We came up with a game called “Doctor Doctor”, where we would take turns chasing each other around our backyard with a pine needle yelling “Doctor Doctor!” (real creative, I know). If you were caught, you’d be pricked with the pine needle until you could either A) fight your way free or B) scream and cry enough to make the other person feel guilty and stop.

Ironically, my life nowadays is like a never-ending game of “Doctor Doctor”. Except I’m the only one getting pricked and options A) and B) don’t work anymore (and are frowned upon when you’re an adult in public).

When you have a needle phobia, cancer is something you want to avoid if you can. Cancer treatment is basically the equivalent of becoming a human pincushion. Luckily, modern medicine has come up with this thing called a port (port-a-cath). A port is a little device that gets surgically implanted under your skin (usually on your chest). A small catheter connects the device to a large vein in your neck. The port can be used for receiving cancer treatment and for drawing blood. I once heard someone refer to it as “the window to your heart”. Under normal circumstances, I would never want a “window to my heart”. And if I did have one, I would keep that window boarded shut. But this stupid little window actually has a lot of perks:

For one, it saves the veins in your arms (which can collapse and become very fragile from the chemo). Once the veins in your arms are damaged, it becomes harder for the nurses to access them (meaning you might get poked by a needle more than once). Another great perk, for me, is that you don’t need to have a tourniquet around your arm (the tourniquet is a huge phobia trigger for me). So, after chatting with my oncologist, I agreed that the port was the best option for me. The surgery was then booked for August 14th (shortly after my Hawaii trip and 3 days before starting chemo). In case you missed it, my last blog post outlines the timeline of my diagnosis and the start of treatment.

When I land back in Vancouver on Friday, August 10th, I receive a call from a random doctor (I believe he was filling in for my oncologist) who was wondering why I was booked to do the operation under general anesthesia (as it’s normally done when the patient is conscious or semi-conscious). He explains that if I do it under general anesthesia, I would need to be intubated and it would be a more serious operation. I explain that I never requested to be put under general anesthesia and that there must have been a misunderstanding. Then, he then starts trying to talk me out of getting the port altogether. He tries to convince me to do my first round of chemo through my arm, and if it’s too much for me to handle, I can always choose to get the port surgery at a later date. He then talks about the possible complications of having a port. I feel super confused and spend that weekend reconsidering the port altogether.

I wait until Monday to try and get ahold of my oncologist to see what she thinks. I’m now leaning towards not getting the port because I knew I’d need a million needles for the rest of my life anyway, so I might as well get over my fear and avoid an extra surgery… right?

When Monday finally comes, I can’t get ahold of my oncologist. I start to panic because my surgery is booked for the following day and I’m still feeling very conflicted. When Tuesday comes (surgery day), I still can’t reach her. I debate it over and over in my head and finally come to the conclusion that: I don’t want the port anymore.

Lucy and I are near the hospital, so we decide to go in person to tell them I won’t be going ahead with the surgery and to apologize for waiting until the last minute to let them know. When I arrive, they want me to speak with a doctor before leaving (turns out they don’t like it when people say “yeah nevermind, no surgery for me thanks, bye!”). So Lucy and I sit down with a doctor who makes a lot of valid points. “Your oncologist thinks this port is the best decision for you, which is why it was the original plan you agreed on together. If you wait and decide to get the port after you start chemo, your immune system will be compromised and surgery could be more risky”. And with that… I decide, “Ok well it looks like I’ll be getting surgery today!”. Very luckily and coincidentally, I hadn’t eaten in a few hours so we were good to go.

I know surprisingly little about what’s involved in the operation. A radiologist comes to see me before the surgery and introduces himself. He explains “I’ll be running a catheter through your neck…”. I want to throw up at the thought of this, “My NECK??”. He seems surprised by my reaction. With a blank look on his face he asks “Is… that going to be a problem?”. Looking back, this moment perfectly sums up cancer treatment in a nutshell. It’s an awful and horrible thing, but there’s no point resisting. You just have to lean into your new pincushion lifestyle.

About 10 minutes before the surgery begins, I finally get a call from my oncologist reassuring me that I should, in fact, get the port. I’m high on Ativan and Lucy and Carlos are both dying laughing at me as I struggle to put a coherent sentence together. I tell her I already have the IV in, I’ve taken Ativan, and I’m about to go into the OR.

The surgery was pretty quick (I believe less than an hour). I was conscious throughout it but also very high.

I have a love-hate relationship with this little guy. For some unknown reason, I was given a “dual” port (meaning the device is twice as big because it has two access points instead of one). Every nurse/doctor that encounters it says “Huh! I’ve never seen a dual port before”. I feel slightly cursed with this dual port because ports need to be “flushed” once a month to avoid any clogging. Because I have a dual port, I technically have two ports that need to be flushed every month. This means that I get pricked by a needle twice instead of once (slightly defeating the purpose of the port in the first place!). Also, for some reason, the brand that makes my port had the brilliant idea of making it purple. As someone who has essentially translucent skin, my port looks like a giant bruised lump that sticks out of my chest. It’s a constant reminder that I’m sick and I can’t wait for the day that I get it taken out.

All that being said, it’s made so many infusions so much easier for me. I’ve used it for chemo, regular blood work, and a blood transfusion. The first time I had it accessed was for my first chemo and it was just 3 days after it was implanted. Not only was I stressed because it was my first day of chemo, but it was still so bruised and swollen and made the whole process extra unpleasant. But ever since then it’s been A LOT easier. It took me a long time to embrace the port. For the first couple of months I refused to even touch it. I hated how I could feel it move up and down my ribcage whenever I put my arms above my head. But now, although I don’t love it, I’m much more comfortable with touching it and having others touch it also.

In the end, I’m happy I got it. I’m especially happy on the days that I’m sitting in the chemo chair and the patient sitting across from me is in pain because the nurse can’t find the vein in their arm. Sure, it’s big, it’s purple, and I was left with a very visible and crooked scar… but it has served me well and I haven’t had any complications so far. If you happen to be someone who is planning on getting a port, make sure you ask your health care team exactly what model you’ll be receiving to avoid any confusion.

It’s up to me when I decide to remove it. But considering the fact that I’ll need infusions every 3 weeks for the next year (at least), I figure I’ll hang on to it until then. I’m trying not to rush things lately. I’m trying to embrace my port, my scars, my body, and my short hair exactly as is. It’s hard, but it also feels like the ultimate lesson of patience and self-love.

xx

Sarah

The Diagnosis: Part 1

Hi!

My name is Sarah and I was diagnosed with breast cancer at age 26. This is my story.

July 2017: I just finished grad school and was on top of the world! It was finally time to move across the country to be with my partner Carlos and to start my first real-adult job as a Speech-Language Pathologist. Once I get all settled in Vancouver, I decide to see a doctor at a walk-in clinic for the pain I was having in my left breast. She gives me a breast exam and explains that I’m most likely experiencing pain from a cyst and that I need to quit caffeine and manage my stress levels (as caffeine and stress can cause cysts to form). She explains that breast cysts usually go away on their own and only need to be drained if they get too big. I figure “Ok, makes sense! My family doctor back home also told me I have cystic breasts, my mom had a breast cyst before, and I have no family history of breast cancer”. I follow the doctor’s orders and quit drinking coffee immediately. Coincidentally, the pain subsides and I figure “problem solved!” (spoiler alert: the problem was not solved).

January 2018: Six months later I return to the same doctor for a routine pap test and breast exam. She doesn’t feel anything concerning during the exam (and neither do I at this point), and I’m no longer experiencing the sharp pain in my breast. All appears well.

May 2018: Fast forward to May, I find a pea-sized lump in the 6 o’clock position of my left breast (it is my non-professional opinion that this is the worst place for a lump because it is the most hidden!). My first thought is “Shit. It’s probably a cyst. I have been really stressed lately. I should go to the doctor. Hopefully it goes away soon”.

Ok listen… I know what you’re thinking. Before I was diagnosed, I would hear stories of women finding a lump in their breast and not worrying about it or not acting on it right away. I used to think to myself “How can you not be worried about a lump in your breast??”. In my defence, I was worried, but I had been told by my doctor (and my previous family doctor back home) that I have cystic/”lumpy” breasts (scientifically known as “Fibrocystic Breasts”), I had had two recent breast exams done by a doctor, and I hadn’t had any breast pain in about 9 months. All of this along with the fact that I have no family history of breast cancer meant I didn’t see a huge red flag. *rant over*

June 2018: I notice the pea-sized lump is suddenly much bigger. I start googling like mad. Google tells me that cysts grow quickly and that tumors grow slowly. I figure “Well this is definitely growing quickly so it must be a cyst). Worst case scenario, it will need to be drained” (ah, how I miss my naivety).

July 2018: The lump is still growing (now the size of a large grape) and I can’t delay it anymore. I drop everything and decide to go to the same walk-in clinic, but they tell me I would need to wait another 10 days to get an ultrasound. My anxiety gets the best of me, so Carlos and I decide to go to the emergency room. The doctor there also tells me it’s probably a cyst but refers me to a rapid access breast clinic for an ultrasound to be sure. Even as a self-proclaimed hypochondriac with an anxiety disorder, not even I was seriously entertaining the fact that it could be cancer.

July 19th, 2018: I go alone to my ultrasound (pro tip: don’t go to important appointments by yourself). When the ultrasound is over, they bring me to get a mammogram right away. I keep asking the staff if I could see a doctor. Finally, when a doctor does come to speak with me, I think it’s because I had succeeded in badgering the staff for one, and not because the doctor had life-changing news to tell me. They bring me to a small dark room (normally used for ultrasounds). The doctor looks very young and seems a little nervous. I wonder if he’s nervous because he’s inexperienced (in hindsight it’s clear why he was nervous). He explains that they won’t know for sure until they do a biopsy, but that the imaging showed all the characteristics of breast cancer

It feels like my chest is on fire. My ears start ringing and I can hear my heart pounding in my head. It doesn’t make any sense. I feel like I’m watching a movie and someone else is sitting on the hospital bed hearing these words. The word cancer feels like it’s being seared into my skin. I burst into tears of panic. The doctor robotically puts his hand on my knee and I want to recoil from him. I’m furious and confused. I ask for a tissue. He looks around the room and hands me a towel, it feels scratchy against my face. Once I compose myself a little, I try to make sense of what he is telling me. I ask, “So how sure are you that it’s cancer? Like 90% sure?”. He replies “Yeah about 90% sure”. All I’m thinking is… “Are you just saying 90% because that’s the number I threw out there?? What the hell is going on?!”. As he continues on, he explains in detail why exactly he thinks it’s cancer. He then tells me that he will do the biopsy himself tomorrow morning and the results from that will tell us for sure. With all care for social etiquette out the window, I ask if he’s done this procedure before. He laughs and tells me that this hospital does the most breast biopsies than anywhere else in the province. Even though it wasn’t confirmed yet to be cancer, the doctor had enough confidence that I lost all of mine.

Biopsy Day (Made possible by Ativan and warm blankets)
Also pictured: The ominous black blob

We have to wait about 6 days for the results of the biopsy. Let’s all take a moment to appreciate Carlos for literally keeping me alive through these 6 days. I could hardly eat or move for the first day or two. I lost about 10 pounds in the first week alone from stress. I just couldn’t fathom that everything I knew felt like it was being ripped away from me. But as time went on, Carlos pushed me to keep living life. We went to the gym together, we went blueberry picking, and I went to work. That’s the crazy thing, life continues on even after it feels like a bomb has just been dropped in your lap. I allowed myself to feel my feelings but needed to be pulled back to reality every once in a while (ok, more than every once in a while). I had to grieve the life I had before cancer because I knew my life would never be the same again. It’s important to go through the grieving process, but it’s also important to keep living life, as difficult as it is sometimes. My motto became “one day at a time”. Everything seemed so insurmountable when I looked at it as a whole, but I slowly learned to focus on getting through each day at a time.

When life gives you lemons, pick blueberries!

July 25th, 2018: Biopsy results day. I wake up and think “Ugh, someone is going to tell me I have cancer today”. I meet with my surgeon that afternoon and lo and behold… I receive the official diagnosis of Invasive Ductal Carcinoma. Breast cancer can be described in three main ways: estrogen +/-, progesterone +/-, and HER2+/-. My cancer was ER+, PR-, HER2+. My surgeon tells me that the HER2+ component of the breast cancer is a very fast growing and aggressive form of breast cancer that was considered practically untreatable up until about 15 years ago. However, now, many women with this type of cancer respond very well to treatment (thank you science!). THIS is the reason that sucker grew so fast. After my surgeon examines me, she tells me she thinks I’m very early stage 2. I think to myself “Ugh why couldn’t it be Stage 1! I could handle Stage 1”. However I wouldn’t find out my actual stage until I received a PET scan (more on that in the next post). My surgeon gives me an idea of what she thinks my treatment plan will look like, but explains that I won’t know for sure until I meet my Oncologist (and so begins the life of having so many doctors that your family and friends begin to lose track of who’s who).

I’ll have to cut it there for now, otherwise this is going to turn into a novel! I’ll talk more about the staging of my diagnosis in the next blog post (read here). Thank you for making it this far!

xx

Sarah