AC arrives not with a bang, not with a whimper, but a...boom?

And also, just for fun, a little sidebar/rant (but seriously, let's talk about some marginally heavy stuff for once)

First of all, can we all talk about the fact that I have a voice again? While I’m not much of a talker, being unable to communicate verbally was frustrating to no end, especially when I had varying degrees of voice loss for the better part of 10 weeks. I started to lose my voice towards the end of December 2017 and was damn near mute for most of February. Granted, I had little energy during this time to really say too much, but the extent to which I lost my voice was troublesome. My poor friends who visited me throughout these months got to deal with my decidedly unattractive croaks and whispers, and for their good humor while dealing with me, I thank them!

So what exactly happened?

Initially, I blamed my voice loss on the acid reflux that I had developed. But once I started taking medications to address that issue, I couldn’t explain why my voice continued to get worse. While nobody was overly concerned about my voice loss, it was decided that I should be seen by ENT to be safe. After a probe to see my vocal chords (sent up my nose, naturally) and then a video probe to videotape my vocal chords in action (sent down my throat, of course), it was determined that I had something like a nodule on my vocal chords, though it wasn’t exactly a nodule.

While nobody could quite explain it, I was asked to start working with a speech pathologist in the hopes that he could teach me proper vocal techniques in order to avoid having to scrape the inflammation off of my vocal chords. If you’ve ever wondered what it’s like to get vocal coaching, it requires the extensive use of a straw to help you track your breathing while you speak and encouragement to speak “like Marilyn Monroe sang Happy Birthday”. If you’re having a hard time imagining me as Marilyn Monroe, I assure you, you’re in good company!

Luckily for me, it turned out that one of the previous chemo drugs I was receiving seemed to cause a reaction that impacted my vocal chords. In the weeks since wrapping up the previous set of drugs, I’ve naturally regained my voice and have happily given up any aspirations to mimic Marilyn Monroe. I will still need to get one more video probe of my vocal chords done to ensure that everything is resolved, but having now had every orifice of my body probed, I think I can sustain one more probe!

The Start of AC

When I last left you, it was assumed that I would begin the next set of chemo drugs on March 14th, which is indeed what happened. I was dreading AC having read too much about just how tough it could be with horrible nausea, debilitating fatigue and more. I think the bright red color of the first drug, Adriamycin, especially contributes to its myth (this is the one called "red devil"). The one behind it is the second drug I currently receive, Cyclophosphamide.

I even took a little video clip of Adriamycin slowly advancing up my IV line in anticipation of the "bang" that would happen, but it's much too complicated to upload it here.

So far though, the “bang” of the exact side effects I had anticipated for months hasn't arrived after my first infusion. That's not to say I'm without side effects, they're just different than I anticipated, hence the "boom". Perhaps more importantly, the first three months of chemo has taught me the power of cumulative effect. I do not take the variation in my side effects from what I expected as proof of the future. I genuinely never know how I'm going to feel tomorrow. It would be foolish to pretend like I know how I'll feel in a week or for the next couple of months.

A massive sidebar...

Now, before we go further, can we sidebar for a moment, specifically on the topic of nausea and the typical image of a cancer patient? Nausea is the most cliched (though not entirely untrue) side effect of chemo. If you think about the stereotypical image of a cancer patient as presented in books and in the media, they’re often bald and while perhaps happy in public, are dealing with bad nausea privately. But the picture stops there.

I want to emphasize that nausea is just the tip of a very large iceberg of side effects (Who am I kidding? Let me call a duck, a duck. Nausea is really just the tip of a massive pile of shit.). Additionally, because getting any kind of food into your system, nutritious or not, is so important through this process, there are actually fairly good anti-nausea meds that have been developed in the last few years. They don’t always work for everyone or in every moment and, as with many things in medicine, some patients must go through a process of experimentation to land on which anti-nausea med works best for them, but they exist. Also with nausea, the doctors are fairly confident when and for which drugs it will occur and they encourage you to take your anti-nausea meds consistently, even if you feel okay.

Unfortunately there is a LOT less certainty when it comes to other side effects identified for chemo drugs. In fact, you pretty much have to go through chemo in order to determine what side effects are going to impact you. The list of potential side effects is simply too massive for you or anyone, regardless of what degree they hold, to even begin to predict.

Allow me to illustrate. The picture below is of most but not all of the meds I've been prescribed (either with a script or over-the-counter (OTC)) to manage side effects I've complained about. I've discarded some bottles/boxes for things I used up and were one time prescriptions, and not all OTC items are pictured, but this gives you a sense of just how many side effects may come into play. And while I've not had an easy time of it, I'm luckier than others if you can believe it. To clarify, just one of these bottles is meant to help me manage my nausea. (P.S. Bottles and boxes are turned backwards for privacy, but each one is a different medicine, Scout's honor).

Ultimately, I bring this sidebar up because there is a part of me that wishes that there was a more nuanced picture of cancer out there, and not just from the perspective of side effects. Current mainstream portrayals of "cancer" barely scratch the surface. It does everyone a disservice when cancer is put into a box of "chemo", or "baldness" or "remission". Because cancer is such a complicated topic, there are many laypersons who are happier burying their heads in the sand when a patient shows a bit of energy, or comes out with a smile on their face, or doesn't talk about all their side effects, rather than accepting that the face of this disease changes every moment.

My good days on chemo are not the equivalent of my normal, pre-cancer days by any stretch of the imagination. When I'm asked "how are you/how are you doing?", there is really no good answer besides "I'm doing ok" in that moment. Giving a longer answer requires a monologue that I can't even begin to formulate. Where should I begin? With my current side effects? With my current (in the moment) emotional state? With the fact that today is ok, but I have no idea what tomorrow will bring or how I will feel? With concerns about whether my treatment will stay on track or what complications from chemo, or surgery, or radiation may throw my schedule off? With the fact that I feel weirdly sanguine at the thought of losing my right breast but that I'm scared that it's just a coping mechanism for my brain and that I will be a hot mess post surgery? The fear that despite this crazy journey, the cancer will recur and quickly? The concern that when all is said and done, long term side effects like chemo brain and peripheral neuropathy will permanently change my life in untold ways? That I'll forever be an anomaly for someone in my age group and that I may struggle to find my social and romantic footing after?

Given the choice between trying to formulate answers to those questions or address the overall picture, it's far easier and efficient to say that "I'm doing ok" because honestly, I don't know what else to say. I appreciate that the question about my well-being comes from a place of genuine concern and love, but my simple, pat answer should not be mistaken for the full picture. I also, bluntly speaking, owe no one but myself the answers to the questions I posed above, though I'm happy to share once I get my mind around the ones that I can possibly answer.

For now, I'll leave this sidebar/rant here as there's no easy answer or neat conclusion. We'll simply return back to our regular programming.

Back to AC

I'm running out of steam on this post (might have a little to do with my rant above), but do want to touch briefly on the "boom" of AC I mentioned. While I can't speak to the future, I do already know that "minimally" nausea, changes to my vision, changes to taste, a massive drop in my counts (red blood cells, white blood cells, hemoglobin, ANC, platelets, and more) that increases my risk of infection and results in fatigue, and...drumroll please...skin lesions that burn like a *mother* will be an issue for me on AC.

In fact, when I initially sent pictures of the new skin lesions to my care team a week after my infusion, they were actually concerned that it was the sign of an infection. They were adamant that I come to the ER at MD Anderson so that my blood work could be assessed and, if needed, I could be admitted to the hospital. My parents and I spent Thursday, 3/22 at the ER where, after many hours of waiting, I was told that my counts were very low but not low enough to be admitted. I was instead given an IV of antibiotics and told to return to the ER if any new lesions developed as I would need to be admitted then.

After being released after midnight that Thursday, the last place I wanted to return was to the ER. I also had serious doubts about whether the lesions were really an infection. But as luck would have it, new lesions formed throughout Friday despite my best attempts to stare them away. Affirmations along the lines of "you are not a new lesion" or "*insert curse word* *insert curse word*, I'm not going back to the ER" were also ineffective. And while I suspected that the lesions were not an infection, a severely compromised immune system is nothing to mess around with, so Saturday, 3/24, my mom and I traipsed back to the ER again.

As you can imagine, being a seemingly stable patient (physically at least; I won't vouch for my mental stability) in the ER does not bode well for your waiting time. After the obligatory several hours waiting period, I finally received a consult from Dermatology, which (thankfully, I think?) somewhat confirmed my suspicions. Dermatology was adamant that it was not an infection and was "just" a reaction to the chemo. To be absolutely certain, they conducted a biopsy of one of the fresh lesions on my arm. And then I was discharged to go home.

While I'm thankful that it wasn't an infection in the end, especially with a heavily weakened immune system, I'm also frustrated that I will again have skin lesions as one of the side effects to these new chemo drugs. I was hoping I was done with the skin lesions after the last round of Taxol back in February. I also question what the seeming sensitivity of my skin means for how radiation will impact me. Ultimately, I can only wish that I won't get to the same state of pain and immobility that I had then while on this chemo. And I will have to cross the radiation bridge when I get. In the end, only time will tell.