Margaret Treanor Frey

This is not a scary or painful thing, more of a medical curiosity.

Along with the nasty chemical burns under my arms, the backs of my shoulders burst out in spots. Not so much red ones, like you would expect from a rash. These were pigmented, freckly. They started on my right shoulder, and over the course of a week, advanced all the way across to my left.

I was supposed to get my last chemo today, but I told them no. I had my blood drawn, like a good little cancer patient, and waited for my meeting with my oncologist, to which he didn’t show. Whatever. The conversation with his PA went like this:
Me: I’m thinking of foregoing the last round of chemo.
Kristi: Well, it looks like today would be the last of three. If the side effects are too bad right now, we can lower the next dose, or delay it a week.
Me: Hm. Let me be clearer. I have been thinking about it, and have finished thinking about it, and have DECIDED not to have any more chemo.
Kristi: …. Ok.

There is reasoning. First, I was already off-script because I was beyond the magical, mysterious 84 days from tumor removal. Second, this chondrosarcoma is so rare, there is simply no information about which chemo might have any effect whatsoever. Doxil was chosen nigh at random because it was supposedly better tolerated than the stuff they first put me on that almost killed me. Third, while the first round of Doxil had 0 side effects, I fell apart rather spectacularly in the second round.

I have a list of about 11 things that are wrong with me right now, but the most outrageous is that the skin in my underarms has started to fall off. And when I say underarm, I mean the skin from my elbow to halfway down my chest. See, they tell you to be careful with your hands and feet. No heat (I’ve had 6 weeks of tepid baths and testing temperatures with my elbows). No friction (I’ve been wearing two pairs of socks, really loose shoes, and walking really slowly). But what they don’t tell you is that you can get hand/foot syndrome that much closer to the body. Because it’s crazy rare. They didn’t even bother putting it in the pamphlet under ‘rare’ symptoms because it’s rarer than those. Because of course. I emailed a picture of what was happening to my pits to the oncologist and they threw up their hands and told me to OMG see a dermatologist right away. They didn’t even know what was going on.

The only dermatologist who could see me in less than 2-6 weeks was in Beverly Hills, so I spent 3 hours driving around so he could tell me it was toxic erythema of chemotherapy. He stuck little tags on me and took pictures it was that interesting. Then he gave me a prescription for lots and lots of steroid cream and admonished me again not to allow any friction to any part of me (no walking, no harsh soaps, no WASHCLOTHS), and no heat exposure, in fact I should exchange those tepid baths for very brief tepid showers.

Luckily we have excellent neighbors who were able to pick Sarah up for her last few days of school (thanks Scott), so I didn’t have to worry about that.

Oh right. And for my next round of chemo, I should try putting ice packs under my arms to prevent the Doxil from migrating there and making the condition worse.

You’ll just have to picture the raised eyebrow with your mind’s eye..

I won’t terrorize you with the picture I sent to my oncologist, but my underarms look and feel like someone applied a hot iron. Several hot irons. In rows.

The dermatologist thought this was probably the worst it was going to get, since the last chemo was three weeks ago, and I have my handy steroid cream now, BUT, you know, if it continues to spread, which it shouldn’t, but, in rare cases it could get really, really… Well. Just keep an eye on it and keep him updated. And that mottled red line on my left arm connecting my elbow to my wrist, that is probably nothing.

He never did spit out exactly what truly horrific thing this could turn into in the rare of already rare cases. Let’s hope it’s moot. I don’t really need to spend all my time as a case study.

Not as much of a non sequitur as it seems, we’ve been watching Neil Gaiman’s American Gods. It started out gratuitously gory, but we stuck with it through a couple of episodes and are liking it. So, spoiler alert, there’s a scene where the protagonist’s wife comes back from the dead. She injures her arm, and it falls off. She tries to sew it back on, but it’s not until some kindly undertakers fashion a metal rod to attach her humerus to the rest of her torso that it really takes. And I’m thinking, okay, what do they think that metal rod is anchoring into when they just jam it in there like that? That would never work, but look at her stitches, they’re just like mine. And there’s a scene later when she takes a hot bath so she’ll have a warm body temperature and feel alive to the touch, and some jerk reminds her that she is in fact still dead, and that hot bath will just make her rot that much faster. And then I think, I’m pretty sure this isn’t what people mean when they talk about representation in media, but I feel ya dead wife.

I feel ya.

Anyhow. I’m done with chemo. And if my last chemo was May 11, then by July 11, I will again be as normal a human as can be expected, free to take hot baths and leisurely walks any time I want. It’s a Tuesday. Look forward to it.

Last Monday, 4/10, I went in to my oncologist, Dr. Hu, to schedule the follow-up chemo we had agreed to a long time ago, before the surgeries. I had been keeping them updated through emails, mainly to ask for yet another refill of the Fentanyl patch because my reconstruction had been delayed, yet again.

I was expecting a very simple consultation where we set our start date and discussed the new agent we were going to be using. They had mentioned Doxil, or doxorubicin, in passing, in an email, so Mark had done some of his own research on it. It is a liposomal version of adriamycin, one of the dreadful chemos I had fared so poorly with before, but because in this form the molecules of chemo are encapsulated in fat, the delivery mechanism was changed. It minimizes the heart damage and nausea. I might not even lose my hair this time. But mouth sores and peripheral neuropathy are still a distinct possibility.
Okay. That doesn’t sound so bad.

But what my oncologist said when I finally saw him was not, “Okay, let’s get started.” It was “There’s a complication. We’re going to get another CT scan, and then decide how to proceed.?”
“What? Why? Has something changed?”
“Well, protocol usually dictates that we initiate the follow up chemo within 84 days of the tumor removal.”
And then my head started spinning and my stomach clenched. My tumor was removed at the beginning of December. It is now the beginning of April. The repeated delays in the manufacture of the prosthesis had pushed out my reconstruction incrementally, weeks at a time, to three full months after the tumor extraction. Then there was the requisite month of healing before chemo. Did I miss some kind of deadline I wasn’t even aware of? Was there no point in the follow up chemo because it was too late? Any micrometastases I might have had were beyond treating? AM I DYING NOW BECAUSE WE’RE PAST 84 DAYS?

Which reminded me of an observation I made to Mark the night before, that I thought anyone who ever had cancer had forever stuck in the back of their heads an addendum to any response made to the common question “How are you?” That no matter how far out of the process you are, the specter of recurrence is always with you. You respond normally,
“Oh fine.” But in your head you continue with,
“So far.”
“For now.”
“Until the next scan comes back positive.”

But we don’t say that part out loud because, while truthful, it’s a downer at parties. And really, any of us could get hit by a bus tomorrow.

But what I very calmly said to my oncologist was, “What’s so magical about the number 84? It sounds a bit arbitrary.”
He shrugged and said, “That’s just clinically how we do it.”
“So, we’ll get the scan and see if anything shows up? How long does it take for a metastasis to become detectable anyway?”
“They’re detectable at about a centimeter, and it takes the average tumor about six months to get that big from a micrometastasis.”
“Well it hasn’t been six months yet… Ah. Mine wasn’t an AVERAGE tumor. So it might show up this early. So. So… If nothing shows up on the CT scan, we assume that IF I have micrometastases, then they are still as susceptible, IF they were even susceptible in the first place, to chemo as they would have been within 84 days, and we proceed as planned.” (So many caveats.) “If something shows up on the scan, then what? How do we do things different?”
“Well. If that’s the case, then we have to come up with a new plan. Probably a new combination of surgery and chemo… Let’s leave that discussion for if it comes up (i.e. I should make sure my will is in order). We’ll schedule you for the CT scan and bloodwork this Wednesday. If that looks good we’ll start the chemo as planned next Monday. We’ll go ahead and make that appointment too.”
“So I won’t find out what we’re doing Monday until I get here.”
“No. No. Email us when you’re done with the scan and we’ll take a look at it and get back to you right away.”
A tense couple of days later, during which Mark and I very pointedly didn’t discuss the potential results, and Kristi, the member of the oncology team who had kindly been renewing my Fentanyl patches, emailed me the same night to tell me my scan was clear. THE SCAN WAS CLEAR. I AM NOT DYING (yet).
They were really busy on Monday, 4/17, when I went in for the chemo. I ended up at the cancer center 8 hours for a 3 hour transfusion. It gave me some time to chat with some of the people there.
The cheerful, well-dressed and coiffed, chatty grandma across the way knew all the nurses because her colon cancer, gone for 5 years, had come back and was now everywhere, including, coincidentally, a bone in her shoulder. We bonded over how yes, actually, that is quite painful. When she left she gave me a concerned look, meant to be reassuring maybe, and stuttered, “But I hope you don’t have any, I mean I wish you all the best.. You probably won’t have any.. Well. I hope everything goes well.” She was too self-consciously aware of providing the object proof to the fear we all walk around with. She wanted me to know that just because it happened to her, didn’t mean it would happen to me, and even if it did, she had managed her metastases on and off chemo and with surgeries for another six years after the recurrence. And still managed to be dapper.
I got the message.
Later one of the nurses brought me some literature on the drug, since I hadn’t had it before. I’m glad she did, because while I knew about the potential peripheral neuropathy, apparently it’s a little bit different with this drug. The liposomal delivery system gives it a propensity to collect in the hands and feet, and can cause open sores, especially if you expose your extremities to too much friction or heat, like cooking, or too-hot baths (nooooooo not the hot bath).
And just as we were discussing this, the disembodied voice of the man in the next chair over, on the other side of the privacy curtain, volunteered, “Oh yeah. That happened to me. About two months after the chemo, I lost so much skin on my hands that I couldn’t so much as lift a water glass for two weeks.”
So my infusion was yesterday. I didn’t sleep last night. I thought I would crash today, but don’t really feel tired yet. I don’t know if it’s a side effect of all the changing levels of too many chemicals in my body, or if it’s more psychological. I’m waiting to start vomiting my lungs out. Or for my hands to flat out rot off of my wrists.
But so far, the first day after my only infusion for the next three weeks, I feel completely … normal.
I keep waiting for the hammer to fall.
But maybe.
Maybe it will be fine.

I’m almost at four weeks post surgery. In another 2 weeks, I’ll be allowed to start my PT (physical therapy).

The first 6 weeks are all about the meat package woven around the prosthetic scapula healing down, solidifying in to position. After all, it’s the only thing holding the arm to my body. I’ve been concerned about the position the shoulder has been healing in. The sling and the overzealous pectorals had been pulling the whole thing forward, so that it was jutting forward at almost ninety degrees. The plastics guy gave me permission to sleep without the sling, which, thanks to gravity, gave me a nice flat shoulder by morning. But then, the sling would have it pulled forward again by the end of the day. Too many repetitions of this are also obviously bad for the shoulder solidifying in one position, so I’ve given up on the sling entirely for now, and lean back or lie down most of the time.

(OK. This was all true except the magnetic brace part.)