I Didn’t Expect THAT: Chemo Port

When you’re told that you have cancer and will need the full complement of treatments, you focus on the concepts of surgery, chemotherapy and radiation. Chemo, for example, can be frightening to think about because of purported its side effects, so you gloss over the details. But when you get down to a practical level and start learning about exactly how the infusions will take place…

I knew I needed chemo. I assumed that it would be administered intravenously, as in, into an arm vein with the bag o’ drugs hanging from the IV pole. Ahhh, but the drugs are caustic and would cause damage to a smaller vein, so to avoid that, they go directly into a major blood vessel to allow for quicker mixing with blood, faster circulation through your body and much less discomfort. This is done through a port.

Let me be clear: a chemo port is a revolutionary device that has made administration of chemo drugs far easier on the patient. Not having the port would be absolutely miserable and likely necessitate breaks in treatment as the patient recovered.

Port_in_a_box
This little marvel makes chemo much easier. The dark purple circle is a soft membrane into which the needle is inserted (through the skin). The tube delivers the meds straight into a major vessel. Easy peasy!

However, it wasn’t until we were talking about setting up a port implantation appointment that I began to grasp what was actually going to happen: a small disk would be implanted onto my chest wall, just under the skin, from which a thin flexible tube would run up and over my clavicle and then down into the blood vessel (probably the superior vena cava, but I didn’t ask). Once I started infusions, the needle from the bag containing the drugs would be inserted through my skin, through a membrane on the port, and that was it for the needle prick. Simple and relatively painless.

But about that port. To me, “port placement”, as the implantation procedure was called, was surgery. And I wasn’t great at handling surgery. Usually I like a lot of info to prep me for what’s coming, but I couldn’t even handle watching a video of a placement procedure.

Port_Placed
After port placement. I was acutely aware of a foreign body poking out of me. Alien, anyone?

I don’t have a lot of fat on my chest. There was nothing to nestle the port down into, and as a result, after implantation my skin was stretched tight. I could see the lump in my chest and I could see the tube as it ran up from the lump, over the clavicle. Turning my head pulled the skin — ow! I avoided looking at it, let alone touching it. All I could think was that I had an entire year of this.

Eventually the skin stretched to accommodate the port, but because it stuck out like a little knob, I worried about twacking it. When I hit it with a dumbbell during a workout, I cried. Seatbelts were a constant concern; I was afraid that the port would get dislodged and injure me in a car accident. Hugs hurt and I instinctively turned that side away from people. And of course, in the event of a huge catastrophe that resulted in the collapse of society and all modern services including port removal procedures, I might be stuck with that thing on my chest for the rest of my pathetic little life.

Eventually, the day came when I finished my last infusion and my oncologist gave the go-ahead for port removal. That thing was out within a week. Removal was simpler than implantation, done under local anesthesia without the need for fasting, and even all the tugging to get it loose didn’t bother me. I was so happy to have it out.

But I’d carried it inside me longer than I had carried either of my children, so I asked to take the port home. While I had hated it inside me, I was so grateful for what it had done. I mean, I couldn’t just let them throw it out! It was handed to me in a bright pink box designed for dentures (apparently, keeping your port isn’t popular enough for the creation of “used port” containers) and now sits on my desk. I prefer it there rather than in my chest.

 

 

A Year With Tamoxifen

One of the most distressing parts of going through cancer treatment was that I thought it would “ruin everything”, even if it saved my life. Physically, I was really enjoying my 50s and hadn’t noticed much of a drop in endurance and strength, and certainly wasn’t experiencing menopausal symptoms. But with my diagnosis came the news that, because I had an estrogen receptor positive tumor, I’d need to be taking estrogen-blocking Tamoxifen (or an aromatase inhibitor) for a decade.

A decade is a long time! Chemo was only six courses over about four months and radiation lasted only six weeks — all time-limited and psychologically doable. But Tamoxifen would be with me for ten years, and presumably, so would the troublesome side effects, according to just about every woman who was taking it. They spoke about how difficult it was to stick to the daily regimen, knowing that it was responsible for horrible hot flashes and night sweats — one woman even said that she couldn’t exercise due to the severity of her symptoms.

Not exercise?!?! My version of hell: a sedentary existence.

At this point, I was busy dying a thousand deaths. I started to question whether death by cancer was a preferable alternative to a decade of misery. Mind you, I hadn’t even begun taking Tamoxifen yet; all of this was fear-driven. I feared having no control over my own existence and the things that really mattered to me. Basically, this was an end to life as I knew it.

So, fast forward to today. I have been on Tamoxifen for a year. I’m still waiting for the misery. Please note, I do not, for a second, doubt that women struggle with Tamoxifen’s side effects and I have the utmost sympathy for them. I also realize that I’ve been very fortunate so far to not have those types of symptoms. Sometimes I feel a little warm and have to roll up my sleeves or take off a sweater. Being in stuffy rooms can feel uncomfortable. But these don’t constitute what has been described to me as a hot flash, and I cannot recall whether I had those same sensations prior to treatment. Before my diagnosis, I’d had some sweaty nights from stress; I haven’t had a single night like that since starting Tamoxifen.

I do have some memory issues, particularly distractibility and loss of focus. Sticking to one thing at a time is an absolute necessity or else I’ll get sidetracked. My libido took a hit too. But is that Tamoxifen, effects of chemo…or just the onset of menopause?

The bottom line is, I had beaten myself up over potential effects of a medication way before I’d experienced it. I’d ignored the number one rule of cancer: everyone’s experience is different. Oddly enough, that had been the mantra I repeated to everyone else, but I’m the one who needed the reminder. For me, Tamoxifen has not turned out to be the torture that I’d expected.

If there’s a take-home message from this, it’s that cancer is a complex disease and its treatment is equally complex. Just as there is personalized medicine, there are individual reactions to that medicine. I, for one, have convinced myself that I need to stay off the Internet, take a deep breath and have my own experience.

Gratitude for Community

My teenage daughter had her eyebrows threaded for the first time (her decision). The threading salon came highly recommended and it was bright and inviting with a peaceful vibe. On the wall by the entrance was a sign next to photos of the owner’s lovely children: “I am not lucky, I am blessed.”

Ok, you probably see where I’m going with this and it has nothing to do with eyebrows. As I waited for my daughter I read the sign over and over again and felt a rush of warm fuzzies. I feel the same way, not simply lucky, but blessed. And in that comfy little shop, I thought about where I was a year and a half ago, scared and disoriented after my diagnosis, feeling like my world was crashing in on me. That seems so far away now.

Later, I was less frantic and lost, but saw a future only as far out as my hand, living treatment to treatment, riding a roller coaster as I went from one new medical experience to the next. But even in the midst of treatment, when I took a moment to stop and look around, I knew that I had so much to be grateful for. Not the least of this were the people who cared for me: brilliant doctors, nurses, therapists and administrative personnel. When I pause to consider my treatment experience, the warmth of these people is what leaves me with such a positive feeling. It was the community of care that made a huge difference: the attending nurses in the infusion room, the radiation therapists that I saw daily for weeks, the other cancer patients, most of whom I never met, but with whom I shared the work of putting together a jigsaw puzzle in the waiting room as we all came for treatments throughout the day. That sense of community, of never feeling alone and always being supported, that’s what makes me feel so blessed right now.

Yes, when I finished my infusions, when I finished radiation, I jokingly told these wonderful people that I hoped I’d never see them again (they get that a lot), but every time I think of them, I am overwhelmed with gratitude.

When Deep Breaths Don’t Calm

It’s an obvious understatement to say that getting cancer is stressful.

My treatment plan involved a lumpectomy first, then chemo and radiation, but just getting to the surgery wore me out emotionally. I’ve written before that I’d never experienced anesthesia before, certainly never had major surgery…and add to that, the surgery would confirm how far my cancer had spread so I was apprehensive about the whole thing.

Suffice it to say, I didn’t handle this process well. Two weeks prior to surgery, I had begun a mindfulness meditation practice at the suggestion of my radiation oncologist. This was a life-changing step for me, but I hadn’t had enough experience with meditation for it to truly benefit me as I was sitting in the “ready room”, waiting for my surgeon. I knew I had to breathe, but it was hard to focus when I was terrified.

The “breathe deeply” mantra was repeated by a number of nurses, probably because I looked like a wreck. I can honestly say that breathing deeply, as hard as I tried, didn’t work. Months later, I came across an article (and unfortunately, I cannot recall whom to credit for this) addressing this issue. The problem with focusing on the breath during periods of extreme anxiety is that the breath is most obvious in the center of the body. You know, right where your racing heart is. I couldn’t separate out the two, and as I was trying to slow my breathing, I was acutely aware of the pounding in my chest.

So, here’s the advice that I would give now: find a comfortable position and focus on your hands. Feel into them and focus on any sensations present in them. Fingers are sensitive, so it’s likely that you’ll feel something. Is there tingling there? Are they numb?What’s the texture of the material that they’re resting against? If you feel nothing, rub your hands together and focus on those sensations.While this type of meditation (essentially a body scan) is often done with eyes closed, depending on the individual and how frightening the surroundings are, it might even work better to keep the eyes open and look at the hands. But really look, so that you draw your attention away from the beating heart, and then gradually try to slow your breathing.

The idea is to keep your attention away from parts of the body that remind you of how anxious you are.

I can’t say that I would have completely relaxed had I known to do this. I had been dealing with runaway anxiety for the past weeks that my rudimentary meditation had only begun to chip away at. But it’s possible that I would have gotten myself into a more comfortable state as I waited for surgery. Definitely worth trying the next time you find that a breath focus doesn’t help with anxiety.

Lifting My Spirits

I received an unexpected but incredibly satisfying compliment today. It was from a worker at Trader Joe’s who made a flattering comment about my arms. A little background here: I like to work out, and even obtained a personal trainer certification when I was a stay-at-home-mom. While I’ve never trained people as a profession, I have maintained my certification over the years — in addition to a vigorous training schedule. I’ve been told that this is unusual for “a woman of my age”.

When I received my cancer diagnosis, I was shocked largely because in my mind my lifestyle didn’t seem to fit the profile of someone at high risk. One of my greatest fears as far as cancer was concerned was that it would affect my ability to train regularly. While so many people engage in eye-rolling when it comes to exercise — it’s popular to equate exercise with misery — having to take time off from working out was one of the most horrible outcomes I could imagine. My version of hell involves a sedentary existence. I train hard to enjoy my life, to be able to move and lift and not feel pain. I work out to live and that energizes me like nothing else. And anything that jeopardizes that is a death sentence to me.

Okay, maybe a little dramatic? But you get my point. I.Love.Exercise.

Today’s compliment was particularly poignant. During my 2017 doctor’s appointment to check out that suspicious lump in my breast, the doctor’s assistant commented that she wished she had my arms. I remembered that as I went through diagnostic tests and oncology visits and surgery. I followed my surgeon’s orders regarding not lifting heavy things (well, mostly, because “heavy” is negotiable), but as soon as that time limit passed, I was off and running. Exercise meant normality, and I craved feeling normal, as in “not sickly and dying from cancer”. There was mention of this nasty impediment to my life called lymphedema. I didn’t really think about it much until I was discussing lifting weights with my oncologist, who said, “Exactly HOW MUCH weight are we talking about here?” and sent me to the lymphedema specialists so that I wouldn’t go full-Schwartzenegger without knowing whether I was risking having my arm blow up. (It hasn’t so far.)

But my point: the compliment I received today made me feel like I’d come full circle. While, yeah, fear of death from cancer is a biggie, drastic changes to one’s lifestyle are also anxiety-provoking.

Today, I felt, I’m back.

What Is Up With My Hair?

But let me back up a bit. My hair has been an issue throughout all of cancer treatment. As everyone knows, the hallmark of a cancer patient is a bald head. That’s pretty unmistakable. Being told you have cancer and waiting for test results is anxiety-provoking because — besides the obvious fact that you have freakin’ cancer — you don’t know the extent of your treatment. Being told you don’t need chemo is a huge plus. For me, this was because then I wouldn’t be a “full Monty” cancer patient, and my perception was that my condition would not be quite as serious as if I were going all in and having to undergo the full spate of treatments (surgery, chemo, radiation). The reality of this is debatable, of course, but for me, finding out that I needed chemo meant giving up hope of all normality. This wasn’t going to be like taking a prescribed medication. This was going to change me physically, and everyone would know.

I didn’t shy away from telling people of my diagnosis, particularly those who were going to see me on a frequent basis. I mean, who was I kidding?

I’d always had long-ish hair, but when it started coming out by the handful, the thought of leaving a hairy trail in my wake was unbearable. I entreated my husband to get the clippers and off everything went. My daughter was supposed to film the entire thing (I was bound and determined to record my experiences for posterity) but this whole episode was a little overwhelming and I started crying…and my sweet kid didn’t want to film a breakdown so she only took stills. I really wanted the video, but whatever. At least I had photos. My husband had fun leading me through an evolution of punk haircuts that allowed me to relive the 80s, but when it was all said and done, I felt better and promptly sent out the photos to close relatives. I got compliments on my headshape and was told that I had dainty elf-like ears. The world of cool Halloween costumes opened up for me.

And man, did I look weird.

So, for the next however-many months I was all about scarves and hats. I got used to always having something on my head because my dream of being the “cool bald chick” didn’t materialize. With my hair gone, I had a very good view of my scalp, and it looked terrible. I guess being a Northern European in a city on the same latitude as Morocco was not kind to my skin, and my scalp displayed the abuse it had suffered all those sunny, hatless days. I had some pretty incredible moles, and, look, I already had breast cancer – I didn’t want to have to deal with skin cancer too. My lid stayed capped.

Now, everything-hair was in a holding pattern until the end of my chemo. First of all, when you google “Taxotere” (one of my chemo drugs) and “hair”, the first entry that comes up is for a law firm that is planning a class action suit against the makers of Taxotere on behalf of all the women who suffered permanent alopecia after taking the drug. This is NOT what you want to see.

After all that, I was pretty impatient about hair regrowth. There is a small percentage of women who do not get their hair back, but it doesn’t matter how small that percentage is. When you’re holding your breath and waiting for your hair to return, you’re convinced that you’re part of it. To make matters worse, my hair had gone all white/gray so it was even harder to see. I gave in to the folly of reading about other women’s experiences with regrowth, and they all seemed to grow hair more quickly. Or not at all.

By this point, I looked like a cross between Yoda and Gollum, since a few crazy hairs had apparently not gotten the memo and decided to keep growing throughout my treatment. Not a lot, just enough to make my scalp look like it was undergoing an identity crisis. My eyelashes were still clinging for dear life, and I had high hopes of being able to emerge on the other side of this journey with some fringe around my eyes…but no. A few weeks after chemo ended, all but a couple of my lashes went the way of my eyebrows. Gone. Nothing quite like being hairless to make you look like an alien from a 70s sci-fi flick.

So I waited. I whined in my oncologist’s office, and cried in my counselor’s. I don’t have much faith when it comes to being patient and seeing how things turn out. My impatience was driven by fear. Every trip to the bathroom was another opportunity to stare in the mirror, trying to determine was that a shadow or a new hair? This was complicated by the fact that my previously excellent eyesight is changing and I’m not adjusting well to that. I forget to bring reading glasses and think that the world has just gone fuzzy, like that’s perfectly normal. To my glassless eyes, I still looked bald.

But at one point I was examining my forehead, where the hairs reeeeeally took their time coming in (what’s up with that???), and saw teeny translucent sprouts. Finally? Trip after trip to the bathroom mirror, squinting from every angle, the hairs were unmistakable. Yes, foreheads are great things, but I didn’t need so much of mine. And finally it was getting coverage.

Let’s fast-forward to now. I have hair. It’s white and I look like my kids’ grandma. But regardless, I have hair and that makes me so happy. Let me say it a few times: hair, hair, hair! And not only do I have hair, I have gravity-defying hair. It’s a few inches long and reaching for the stars. I use hair styling products with names like “taffy” and “putty” to keep it in place, but when I wake up in the morning I look like a Pomeranian. I didn’t even realize my hair could do that.

Note that I am not complaining. My eyelashes came back. My eyebrows didn’t, but that pulled me into the creative world of brow design. Once I got past the “my-brows-were-drawn-by-a-five-year-old” stage, I got into the look and expanded the rest of my make-up to balance my face out. In the end, I look more put together. At the same time, I don’t look like my old self. But perhaps that’s not so bad – I am not my old self inside, and that’s being reflected on the outside. Yes, sometimes I walk past a mirror and shock myself, but this journey has been transformative and I’m going to have to get used to that. As with everything, deep breaths.