In a little over two weeks from today I am having my port removed. My personal experience with my port has been only positive. I never had a complication or infection due to my port placement, my port being accessed, or my port coexisting within my body. The major changes that came from my port placement were my sleeping positions. I went from sleeping on either my stomach or my right side to sleeping on my left side and occasionally on my back. That was a substantial adjustment for me, however after several weeks I didn’t even notice the change. There were a few other changes or modifications that I had to make after my port was placed; such as what type of bra I was comfortable wearing, how a seatbelt fit across my body if I was riding in the passenger seat of a car (I found myself holding it out from my chest with my left arm), and the position in which someone hugged me.
While those adjustments may seem annoying and inconvenient, they were ones I was grateful to be making. Prior to my port placement I underwent 7 ABVD chemotherapy treatments alternating the veins in my left and right arms. The stress and anxiety of, “will they find a vein?”, “what happens if they can’t?”, “what happens if they miss?”, “what happens if they have to stick me over and over?”, “what happens if I have to miss a treatment because they can’t find or access a vain?” was constant. Those are just a few of the hundreds of different “what if’s” that would run through my mind as I approached another treatment. Prior to being diagnosed with Stage 3a Hodgkins Lymphoma I had my blood drawn by the “new” nurses. My veins were fat and easily stood out against my fair skin. They didn’t roll or hide, so if you couldn't get me on the first stick that was a sure sign you were probably in the wrong profession, or at the very least having the worst day ever in your medical career.
As the I started slugging out each of my six rounds of chemo my vans became smaller, less pronounced, harder to find and even harder to access. The time sitting with hot compresses on both arms in hopes of a vein big enough to take the ABVD chemo grew longer and longer. The force my oncology nurses had to use in order to pop my arms in an attempt of getting my veins to pop up even more grew too. With each treatment I became more and more defeated, stressed and anxious. Around my fourth infusion I started having some pretty extreme nausea that my premeds were struggling to keep under control. I began receiving extra doses of Zofran through my i.v. as I began to salivate more and more and inch closer to vomiting. I started to reconsider the idea of having a port placed. I had two reasons for not having one placed before I began treatment: 1. I had great veins and I have a cousin who also conquered this bitch of a disease and was able to complete her treatment without a port and her veins remaining accessible, and 2) I was so over being poked, prodded, scanned, and sliced that #1 was all I needed to give it a shot port-less. My oncologist and I spoke in detail about what a port does, the benefits of having one, etc… and after his nurse (who I’m completely over the moon grateful for) studied my arms for what seemed at the time as an obnoxious amount of time and agreed I was a good candidate to give it a go without a port, I scheduled my first ABVD treatment.
Each of the seven treatments prior to my port placement took around 5-6 hours to compete. This included my premeds of anti nausea medications, steroids, and saline fluids, each of the four chemotherapy drugs, and a flush in between each as well as a lengthy flush of saline fluid after my treatment was complete. As best you can, imagine sitting with one of your arms completely straight for 5-6 hours. Within those 5-6 hours you’ll eat a meal, need to use the bathroom at least once, visit with whomever may be with you, take a nap if you’re able to fall asleep, and maybe enjoy reading a book or watching a movie/video/tv show on an iPad or your phone or computer, all while one of your arms remains completely straight.
Now, imagine your i.v. being removed, your arm bandaged and now being able to bend it for the first time in 5-6 hours. Feel any discomfort or pain?
It was during my fifth of twelve infusions where I learned the prepackaged saline flushes were a large contributor to my nausea. My nurse, Liz, had had a patient earlier that week who had grown increasingly nauseous as prepackaged saline flushes were administered to the point where she was vomiting and intravenous nausea drugs were not able to control her nausea. Liz decided to switch to pulling “fresh” saline from the girl’s saline drip and also from a vial of saline.
Problem. Fucking. Solved.
Liz is amazing. When she saw that I was having a similar response as her other patient she made the same switch for me. As I type this I have tears pouring down my face because that level of awareness and creative treatment approach kept me from vomiting. It saved me from unbearable nausea that was debilitating.
Treatment #6 and #7 were without prepackaged saline syringes and resolved the majority of my nausea. However, what cropped up during those same treatments was what is referred to in the cancer world as “anticipatory nausea”. It essentially speaks to the one in three cancer patients who experience this Pavlovian response, meaning the smells, etc… from previous treatments brings up a physical response, such as extreme nausea and even vomiting. Fortunately, I never experienced the vomiting side of anticipatory nausea; however, I did experience quite a bit of dry heaving.
The dry heaving, mounting stress and anxiety, and decreasing accessibility of my veins led me to revisiting the conversation of having a port placed with my oncologist.
I took a week to make my final decision and scheduling my port placement procedure. The amazing thing about a port is that as soon as it’s placed within your chest it can be accessed. While I gave myself until the following day to have it accessed with chemo #8, I knew almost immediately it was the best course corrective decision I had made. The placement procedure, while a bit scary because I was awake and I didn’t know how it was going to compare to the completely traumatizing experience of my bone marrow biopsy, was instead, a cake walk. I visited with the nurse anesthetist during the procedure who kept administering sedatives because I was showing no sign of being in what is called a “twilight” state. After the procedure was completed and I was in recovery, I met a nurse who ended up hijacking me as a patient from my scheduled post op nurse because he was a Hodgkins Lymphoma survivor. We hung out and talked and he gave me the encouragement, hope, strength, and pep talk I needed to finish the remaining five chemo treatments.
Turns out hindsight is still 20/20 and while I do have a certain amount of regret for not having a port placed prior to beginning treatment, the timing of having it placed sailed me through my remaining treatments.
Not only did I have more treatments behind me than in front of me, I could now read a book, eat a meal, use the bathroom independently, play on my iPad, etc… with BOTH arms. I gained a massive amount of freedom during treatment with having a port. After it was accessed for the first time, I went home and found myself crying uncontrollably because of the amount of relief, freedom, and independence my port had suddenly given to me. I called my cousin who has been cancer free for almost 19 years from Hodgkins Lymphoma and talked through what I was experiencing. Another bonus I gained from having my port placed was spending less time in the treatment chair.
How’s that possible?
Chemotherapy that is administered through a port can be pushed at a higher/faster rate than when it is being administered through a vein in your arm. With some of my chemotherapy drugs being vesicants (an agent that induces blistering) and needing to be pushed at an incredibly slow rate and one in particular being pushed manually through a giant syringe (even with the port), it added over an hour to the amount of time I spent in my treatment chair. I went from leaving treatment not only feeling crummy and smelling like chemo and holding whichever arm I received treatment in close to my chest and fighting back tears, to high-fiving my nurses and strutting out of that chemo treatment chair like the boss lady that I am because it only took 4 hours bitches AND I peed all by my damn self and enjoyed my snacks and books and naps.
Ernest, yes, I named my port, blew fresh winds into my sails and made those last five chemo treatments as tolerable and enjoyable as chemotherapy can be. And for that I am forever indebted to the brilliant minds that are behind the creation of this medical device. As December 6th approaches and I part ways with Ernest, I am both excited and terrified. Excited for the obvious reason of having it removed reminds me that I am in remission, it’s not needed anymore, returning to my preferred sleep positions, hugging people without wincing if they press on my port, riding shot gun naturally, and being able to wear whatever bra I want. Terrified for the anxiety of having my blood drawn every three months for the next 3-4 years during my check ups, the potential of whatever vein can be found and accessed being blown, being stuck over and over, and the fear of recurrence and parting too soon with Ernest.
Cancer has taught me many things which I may continue to unpack in a more public way, however, the lesson I am still gleaning from is waiting. Waiting for the next scan, the next check up, the next blood draw. Except for a certain demographic of friends I have, everyone else in my life has taken the mindset of, “cancer is over, you beat it”, and while that is true, it is only a half truth. I am in remission. I have beaten cancer, for today. While I hope and pray I never experience a recurrence of Hodgkins Lymphoma or any other secondary cancer(s), that possibility is a very pronounced blip on my radar. Also, being in remission prior to 5 years isn’t the same kind of remission you have after the 5 year mark. It’s what I call “practice remission”. It’s real, it’s valid, but it’s practice. I haven’t fully arrived in remission until that 5 year mark. And even after that hallowed 5 year mark I’m still at risk. A friend I met along the way with the same type and subtype of cancer as me has just been told after SEVEN years of remission that it’s back.
SEVEN.
So, let the end of this be a gentle, yet direct, reminder to practice awareness regarding the verbiage you use when speaking to friends, family, and even strangers regarding the completion of cancer treatment or the treatment for any other life threatening disease or illness. It will mean the world to me, and it will mean the world to them having someone in their tribe who can hold space for the unknown in the midst of hope and celebration.
