Everything You Ever Wanted to Know About Having Cancer

[Content note: medical stuff]

A few weeks/months ago (what is time, anyway?) I invited my friends to ask me absolutely anything they wanted about what it’s like to have cancer. The result was this epically-long Q&A, which was actually quite fun for me to compile. Folks have been saying it’s useful and interesting for them too, so I decided to make it public.

If you have questions you’d like to ask and you know me well enough to know how to reach me, feel free to send them my way and I’ll answer them when I update this. Ask anything you want; if I’m not comfortable answering, I won’t. But you can probably tell from this article that there’s not much I’m uncomfortable answering.

The first set of questions is dated November 23, 2017, so some of the details of my treatment have probably changed.

Q: Are there any medical techniques or technologies you’ve learned about that you think are neat/fascinating?

A: Well, chemotherapy is kind of fascinating in and of itself. Different chemo drugs do slightly different things. Some actually kill the cancer cells directly. One of the drugs I’m currently getting, cyclophosphamide, does this through its “metabolite phosphoramide mustard,” which, yum I guess.[1] Some, such as Adriamycin (which I’m also getting right now), try to literally fuck with the cells’ DNA so they can’t reproduce.[2]. Taxol, which I’ll be getting during the second half of my chemo regimen, interferes with cell structures called microtubules (that’s so fucking cute I’m kinda like omg don’t hurt them) which also assist with mitosis.[3] Altogether this regimen targets cancer cells in three different ways and the reason these drugs are used together in this way is simply because decades of clinical trials show that this is the best way we’ve found to use them right now. Neato.

Of course, these drugs also do all of that stuff to healthy cells. But not all of them, which is why chemo doesn’t kill you. Chemo drugs target rapidly-dividing cells, which is why they tend to impact cells in the gastrointestinal tract, bone marrow, mouth/gums, hair follicles, and some other stuff. Sucking on a popsicle during the chemo infusion causes a lot of cells in your mouth to kinda go dormant for a bit because of the cold, which means they’re not dividing very much, which greatly reduces the chance that the chemo drugs will “see” them and target them. It’s kinda like when the Jews in Egypt put blood on their doors so that god would “””pass over””” (HA!) and not kill their firstborns. Random little Judaism reference there.

I sucked on a popsicle during my chemo infusion, did not get mouth sores as a result, but definitely did drop a chunk of popsicle down my shirt while trying to communicate with a very attractive pharmacist who was trying to explain my medication schedule to me.

I will reanswer this question when I think of additional cool medical techniques.

Q: I know you find/were finding all these medical procedures invasive and awful; have you adapted, is the increasing familiarity reducing those horrible feelings?

A photo of the author wearing an eye mask at the hospital.
The cheapest and simplest way to prevent panic attacks.

A: Yes! Those feelings were very much system 1 and not system 2, so they weren’t, like, part of my value system or anything.[4] I’ve always thought medicine was very cool. The more primal parts of my brain just didn’t agree. Now I don’t get those feelings as much. When I do get them, I approach them playfully and let myself and others laugh at the faces I make and the questions I ask. My doctors and nurses are all too happy to help both with the silliness and with the detailed explanations that, while unpleasant at times, act as a continued exposure therapy.

Q: Would you ever try any experimental treatments if offered? (From a legit doc, not woo.) What would make you decide that was a good route?

(Related question: Would you ever consider to enroll in a clinical trial, and why or why not?)

A: Yes, and I already am. I’m in a clinical trial for a drug that may reduce the cognitive effects of chemo. Weirdly, the drug is actually an antibiotic (minocycline) that’s been used for ages as, well, an antibiotic, but seems to have some other properties.[5] Of course, I don’t know if I have the placebo or the drug.

Another experimental technique my doctor is doing is giving a monthly injection of a drug called Zoladex, which suppresses ovarian function. [6] Although that’s sometimes used as a direct part of breast cancer treatment, in my case it’s because of some preliminary evidence that suppressing ovaries during chemo prevents it from targeting them (in the same way that popsicles help prevent damage to the mouth, as I discussed above), which may help preserve fertility since I opted not to do anything legit about that and this costs nothing and has few to no side effects.

As for experimental treatments of the cancer itself, that’s something I’d do only if my cancer was like, extremely rare/considered untreatable/etc. Thankfully mine is actually pretty “routine” as cancers go. There’s no good reason to try anything unproven there. But if I were in that sort of situation, I’d be weighing the known risks and benefits of the experimental treatment against the risks/benefits of treatment as usual, just as doctors themselves do.

I’m also potentially enrolling in a clinical trial for BRCA gene carriers (if it turns out I am one) which studies how the information presented about the gene by doctors impacts decision making. For that study, I wouldn’t be denied any information—I’d just be given some additional resources that I wouldn’t have received otherwise.

In terms of deciding to enroll in clinical trials—I’m a fucking nerd for research and I believe that research is going to save so many lives. I would enroll in any trial that didn’t present significant risks to me. Time or extra needle sticks don’t matter to me (plus I don’t have needle sticks anymore thanks to my port). I love the opportunity to talk to even more doctors about even more nerdy shit.

Q: Has this affected your sex life?

A: Ish? The artificial menopause I’ll have to be in for the next ten years reduces vaginal lubrication, and plus I’ve been having less sex than usual because recovery from surgical procedures/other pain/just having other things on my mind. But when I do have sex, it feels about the same physically and mentally as it did before. Sex wasn’t super important to me before, and continues to not be super important to me now.

Q: Do you have weird food cravings?

A: No, but I’m told this may change further on in chemo. It destroys taste buds, which means I may develop a taste for spicier/more flavorful foods. That would be cool because sensory overstimulation is a huge issue for me right now, with taste and with everything else. I often can’t eat foods I love, whether they’re fruits or whatever else, because they’re just too MUCH.

Lately I keep having very specific food cravings, such as cheeseburgers or Chipotle, late at night. Didn’t really happen before. But that’s neither here nor there. And not that weird.

The author surrounded by salad, oatmeal, all-bran cereal, apples, raspberries, yogurt, and flax seeds, and additionally holding a prune.
The most important thing about food nowadays: FIBER.


Q: Is it ever awkward to tell people you have cancer?

A: Yes, all the time. But it also feels extremely awkward to interact with anyone for longer than ten minutes WITHOUT them knowing, because it’s going to come up. It’s a very big part of my life. It’s also not something I feel upset or sad about any longer for the most part, which makes it weird to be like, “So my ridiculous cat tried to sit on my port incision the other day—I have this thing called a port which is used for chemo because I was diagnosed with breast cancer three weeks ago oh no don’t worry it’s okay I’m not even that sad about it now—and anyway—“

But I’m learning to just go with it. On the way to Montreal I met an amazing history professor on the plane—we exchanged numbers and everything—and during the flight we talked feminism and Black Lives Matter and religion and all sorts of stuff, so naturally the cancer thing came up. I told her, “So, three weeks ago I was diagnosed with breast cancer,” and made space for her to say, “I’m so sorry to hear that,” said “thank you,” and then continued on with my point, which was about learning for myself how tragedies sometimes make people come through in ways you didn’t expect. It was great.

Q: How do you feel about having to talk about sex and birth control with the doctors in front of your parents?

A: NOT GREAT. But it was necessary for me to receive the best possible care, medical and familial. Let’s just say we ALL know way more about each other now than we ever bargained for. Life goes on. And thank god it does.

Q: If you need a double mastectomy, and you need reconstructive surgery, would you get implants that resemble your current boobs, or would you want to take a more active design role?

A: I did already think about this even though my surgery’s not till late March at the earliest (I think about everything). Have I mentioned that I love doctors? My plastic surgeon was so direct, blunt, and nonjudgmental. He was just like, “Some people choose to get as close as possible to what they looked like before; others choose to take the opportunity to get a breast reduction or enlargement.” I definitely don’t want them to be smaller. I love my boobs. Having somewhat bigger boobs might be cool, BUT I already have trouble with things like dresses and button-downs, and that would suck. Plus new bras. Expensive. Insurance may cover getting any type of reconstruction I want, but it doesn’t cover the bras. [Update 1/11/2018: apparently it does cover the bras, holy crap.]

Beyond size, I don’t have much control, sadly. I can choose between two types of implants (one of which is just obviously superior) and tissue-based reconstruction, but I don’t have enough abdominal fat to get the same size breasts I have. So it’ll probably be silicone implants, which means perky and lifelike but not exactly natural-feeling.

I may opt for a nipple reconstruction/areola tattoo that looks slightly different than what I have. Or maybe not.

Q: I feel like chemo is a weird toxic potion out of D&D with the range of wild side effects and i dont know how u do it tbh

A: I mean, yeah, basically, that’s one of the best metaphors I’ve seen for it. The way I’m doing it is basically getting very lucky and having great doctors/drugs and almost no noticeable side effects! But they may get worse over time, so I guess I’ll keep you posted.

Q: How are work and work people dealing beyond the accommodations they have to provide? I feel like social workers should get this stuff, but I also know the culture can get uncomfortably self-sacrificing at times.

A: Perfectly. Of my two supervisors, my coworkers, and my clients, not a single person has said or done anything that was anything other than fully supportive and appropriate. Maybe if it were anything other than cancer I’d have something more critical to say, but this is kind of one of the few things where everyone is universally like Holy Shit This Is A Big Deal Oh My God What Do You Need. My coworkers and supervisors have, in my opinion, gone above and beyond in terms of emotional support and other types of assistance. One coworker texts me periodically to check in while I’m out of work. Another brought me a beautiful potted mini rosebush one day while I was at work.

Now, I wish I could say the same about agency policy and how FMLA is set up, but that’s not the fault of anyone I can even name or identify. So whatever.

Q: What’s your least favorite response when you tell people the news?

A: “Oh my god I’m so sorry wow that is H O R R I B L E gosh my so-and-so died of cancer actually”

Q: What’s your favorite thing to talk about these days?

A: You mean besides cancer? Haha. Almost anything but politics, which I don’t care much about right now. Books I’m reading, because I’m happily back to that now. My family. My cats. Food. Plans for the future.

Q: What’s the attitude in your area/among your doctors toward medical cannabis (or is that something you’ve even discussed with your doctors at all)?

A: I haven’t asked/needed to ask, so I can’t speak to that much. But given that it’s been recently legalized in Ohio and doctors at Ohio State like to be on the cutting edge, they’d probably be pretty frank about its potential benefits and potential drawbacks. But I doubt I’ll find myself looking into it, since medical marijuana for cancer patients is mostly used to manage nausea, and my nausea is being EXTREMELY well-managed by the medications they’ve prescribed. (It was more of a thing back before they had those medications, I think.) My biggest concerns with chemo are brain fog and fatigue, and unfortunately cannabis is probably not of much help there.

Q: Tig Notaro in her stand up show about having cancer talks about having trouble having normal conversations with people after being diagnosed because her friends didn’t want to, for example, talk about when things were going badly for them because obviously their shit wasn’t as bad as having cancer.[7]

Is there anything you’ve figured out in terms of when you prefer people to be particularly sensitive about how they talk about cancer things with/around you vs times you wish people would just relax about it?

A: (I love that standup show) I don’t think I have many preferences here, besides the obvious one that I don’t really want to hear about anyone’s fears about me. But that’s just ring theory stuff. I’m happy for folks to continue to vent to me about silly life things that don’t “compare” to cancer in any way, and that was the case even during that first terrible week. There aren’t any like human problems that make me think, “Ugh, I have too much cancer to care about this.”

Now, I definitely get irritated at people who start arguments/debates with me and expect me to give a fuck about addressing their petty ass ignorant little fucking quibbles, but honestly, I already felt that way even before. We all have shit to deal with. I had shit to deal with before I had to deal with cancer. I don’t care about Facebook Debate Club anymore.

The author posing at the chemo infusion center with that creepy stick thing they put IV bags on.
Believe it or not, I am actually getting chemo RIGHT NOW.

Q: What does chemo feel like while it’s happening?/Do you notice it going in?

A: Nope, it doesn’t really feel like anything. What you do feel is the stuff they give you before chemo, which is a powerful cocktail of anti-nausea meds that makes you feel pretty sleepy pretty fast. But I have narcolepsy, yay, so I’m used to suddenly feeling pretty sleepy pretty fast whether or not I’m having anything pumped straight into literal jugular vein. And speaking of that, ports are superior to IVs in many ways but one is that you don’t feel the slight burning or pinching you sometimes feel with IV lines. You don’t feel anything at all. Or at least I don’t.

Q: How large/obvious was the lump when you found it?

A: Large/obvious enough that I found it while mindlessly running my hand over my own body while lying in bed. (Not even in that position they put you in for manual breast exams that makes shit easier to feel.) I felt it instantly. I wonder if it had even been there the day before.

Q: Have doctors recommended changes in exercise?

A: No, although they recommend staying as active as you (safely) can which would definitely constitute a change for most people. I mean, they basically recommend their usual thing of trying to at least walk half an hour each day, or doing some aerobic bullshit at least 3-4 times a week, or whatnot. But the difference is that exercise is one of the only proven ways to help with chemo-related fatigue, so if you really commit to doing it every day, that’s kind of the best thing you can do for yourself. My doctor was glad to hear that I like walking/hiking and already do them a lot because he says that works well for many patients. He said that swimming, which I really want to get back into, is also great, but I may not be able to find a suitable pool close enough to be willing to drive to.

Also, you can’t do any contact sports while you have a port in. But I don’t do that anyway.

The author doing a high plank as part of their yoga practice.
Exercise: still very important

Q: What’s the most surprising thing that’s come out of this diagnosis/treatment so far?

A: There really are so many so I’ll probably want to keep coming back to this thought. But the one that’s on my mind right now is the fact that I have become very (almost eerily) calm in the face of most things, including cancer itself. I wasn’t the first week. But. Yesterday [11/22/2017] when I was trying to check in for my flight to Montreal and was told that I can’t go without a travel visa, I naturally took that to mean that I can’t go on this trip, and in the next instant my brain was just like, “Oh, bummer. Okay, let’s see who can pick me back up from the airport. I’ll plan to spend Thanksgiving with my family, or join my friends’ dinner if that doesn’t work out—“ In the next instant the agent told me that I would probably get approved in minutes if I apply online right now, so I did that. As I did, my parents, whom I’d already texted with the unfortunate update, called me, trying to reassure me—“Don’t get upset, we’ll go another time”—but I wasn’t upset. I hadn’t ever even been upset. And not because I’d gone sour-grapes on the Montreal thing, or not cared about it—I was really excited! And very happy when the visa quickly came through. But I just wasn’t even upset. At all.

I do still get upset when people treat me badly, or when sensory stuff overwhelms me or causes pain. I also have my normal social anxiety. I’m not a weird positivity robot. But like…this is weird and cool!

Q: What is the chemotherapy regimen that your doctors have suggested/decided on?

A: I talked about this a bit in the first question, but it’s AC/T. (Adriamycin and cyclophosphamide together, then Taxol on its own.) It’s dose-dense (every two weeks), four doses of AC, four doses of T. The other components of my treatment are surgery (exact type TBD), possible radiation depending on the type of surgery, and ten years of hormone therapy. No stem cell transplant indicated as far as I know.

Update (11/28/2017)!

Q: How often do you get chemo? How long do infusions last? How are you feeling about the port/Matrix hole now that you’ve had it for some time?

A: Every two weeks, on Monday. It takes about two hours once you actually get in the chemo chair, but before that there’s all the usual vital signs stuff plus accessing the port, doing bloodwork, and meeting with either the oncologist or his nurse practitioner to talk about how stuff is going and have a physical exam and discuss anything concerning in the bloodwork (hasn’t been anything concerning in mine). Altogether I was probably there for three and a half hours yesterday [11/27/2017].

I feel better about the Matrix hole now! I don’t think about it except when I accidentally touch it and remember it’s there (it’s a raised bump on my skin). Definitely better than IVs and blood draws, not that those really bother me anymore either.

[Update 1/11/2018: I’m now on the second part of the chemo regimen, taxol, and it takes much longer. Like four hours.]

Q: Can you describe some of the experiences around having the port?

A: Now that it’s actually healed, I don’t have to think about it much. It feels like a weird little raised bump on my chest and there’s a noticeable (but not extremely so) scar. Before it healed, there were some uncomfortable moments, such as when Anya sat on it and when I stood up from a sitting position and suddenly FELT it inside me, bringing on a powerful wave of phobia-induced dizziness. But I was able to avoid passing out.

When they access the port for IVs, it doesn’t feel like much of anything. They poke it with a special needle, which I guess feels kind of just like getting a normal shot (NOT like getting your blood drawn or having an IV put in). They have to flush it with saline before and after using it to prevent infection; I hate this because saline smells bad and that triggers my phobia a bit, but it doesn’t feel like anything. One Monday for chemo I decided not to take my anti-anxiety meds and see what happens—unfortunately, I did have a panic reaction and the nurse had me lie down and talk to her about unrelated things, which helped me overcome the panic soon enough.

During chemo, they cover the port with gauze; the catheter sticks out of my shirt and that’s where they hook up all the pre-meds and chemo infusions to. I would forget it’s there if not for the tube and the fact that the creepy IV robot has to follow me if I go to the bathroom.

I intentionally don’t look when they do anything with anything, so I couldn’t even tell you what it looks like.

Q: Inasmuch as having crushes and flirting were part of your life before, has that changed in the last month?

A: I don’t think so, because they were barely part of my life before. I get crushes very rarely, and most of the time when I get them, I don’t have much of an urge to “do” anything about them so they just go away. Now I have even more on my mind that isn’t dating/relationships, so I imagine I’ll get them even less. I had a hard time understanding the concept of dating before; now I don’t even really understand what the point would be. I have so much love in my life from friends, family, and partners. Anyone new who wants to be a part of that loving circle will have to really prove themselves, because I’m past wasting my time.

Q: How effective are meds at managing the side effects from everything? Like what’s the state of the science on making chemo as less-sucky as possible, at least in your experience?

A: Very! A lot of this is very new, not even just because the drugs are new (some aren’t) but because the whole idea of doctors actually caring about your chemo side effects is new. I get the sense that before, it was kinda like, “Suck it up because this is keeping you alive.” Now it’s like, “We have to do this treatment to keep you alive, but you should be as comfortable as possible during it.”

The major side effects is, of course, nausea and vomiting, and those are very well-controlled by the cocktail of drugs that I’m on. They even give you three different anti-nausea drugs through an IV half an hour before they start the chemo infusion. When I really focus on my body and how it feels, I can sense this sort of…massive well of nausea underneath everything, but it doesn’t really bother me and I can just ignore it. I think some of the drugs suppress my appetite a bit, but I try to eat normally by choosing tasty healthy things, and my ability to eat is unaffected.

They also do a lot of other preventative stuff—everyone on chemo now takes Prilosec for heartburn every day, regardless of where they are in the chemo cycle. Heartburn is apparently a major side effect but I haven’t had any.

They also give you a drug that boosts white blood cell production in the bone marrow, which prevents lots of the horrible infections that chemo patients used to have as a result of their immunosuppression. I’m still trying to be careful about it and try to remember to wear face masks in crowded places, but chemo patients used to not be supposed to really go out at all to avoid infection risk.

Fatigue and sleepiness are the ones that meds don’t really help with. Chemo patients are sometimes prescribed modafinil, which I already take for narcolepsy (and which may explain why this isn’t any WORSE than it normally is), but that has a limited impact. Still glad I have it, though.

Q: Did they say if your particular cancer is estrogen-sensitive?

Yes, it is. I’ll be on estrogen blockers for ten years after I’m done with treatment to help prevent it from recurring.

Q: Are there any activities that you’re extra into these days? Moar breb? More dancing?

I’m not sure yet! That might change. There are a lot of things I’m LESS into (cooking, baking, socializing in big groups where I have to pretend I don’t have cancer). I seem to be more interested in things/ideas in general, though, and I always seem to be able to occupy myself by reading books or stuff online. I even made a new Reddit account and use it to find interesting things on subreddits I like.

I also talk a lot more to my family now, about lots more personal things than I used to. During the past month I’ve had the privilege of hearing some truly incredible (and in some cases devastating) family stories. I learned things about my own parents that I never knew. My teenage brother has opened up to me to ask for advice and resources for his own personal issues, and as a result we’ve also learned a lot more about each other. My siblings are very much aware of what’s going on and I feel like they’ve both had to grow up a lot in the past month. As a result, talking to them is different now. We text back and forth; we never really used to do that. On Sunday when I was stuck in the airport and my dad and siblings were driving home from Chicago, Daniel called me just to chat on the phone; I think he either knew, or someone told him, that I was really struggling that day.

I’ve also become more comfortable with not doing much of anything. Sometimes I like just sitting and resting and contemplating my life.

Q: Does the port make you feel like a cyborg (hopefully in a cool sci-fi way)?

Yes. I feel like a character in a dystopian sci-fi novel. There’s an impostor inside my body trying to kill it from the inside out, but science is trying to save me.

Q: Have the cats been behaving differently since the diagnosis? Have they become especially good fluff nuggets?

A: Anya has insisted on laying on paws and applying her healing touch, which I jokingly say is why my tumor has shrunk. But then, she did that before too.

Katya has become somewhat more needy, although again she was always needy. The morning of my first chemo, she pressed herself up against me really hard while I was relaxing in bed. It was like she was worried about me and didn’t want me to go. But I was okay.

Q: So your tumor’s gone? Does that mean you’re in remission and don’t have to do chemo anymore?

A: If only it worked that way! The fact that my tumor is (mostly) gone is definitely a sign of incredibly strong response to the chemo. My oncologist was straight-up SHEWK and even let slip a “Oh my god,” which you don’t NORMALLY want to hear a doctor say while examining your body but this time was very welcome. He explained that most of the time, there isn’t ANY change in the tumor’s size until at least 2-4 weeks (it’s been gone for days and it’s only now been 2 weeks), let alone such a huge change. He also said that it’s rare for chemo to have such a powerful effect while also not causing much if any side effects. He could still feel the tumor there, but barely, so it’ll probably be gone completely soon.

However, this doesn’t signal remission because a tumor is only the most obvious sign of cancer. The reason we have chemo at all is because there could be cancerous cells anywhere in the bloodstream just waiting to latch on to an organ and grow into new tumors, which is why cancer can recur even years after apparent remission. Only a full course of chemo can have the best shot at preventing that. It’s kind of like antibiotics that way.

But yes, this is wonderful news, and very statistically rare. Maybe even as rare as getting this fucking disease at my age in the first place. 

Q: How are you doing?

A: I’m doing well. I’ve accepted that I have cancer. I’m mostly continuing with my life as is, as much as I can.

Q: Is there an official #FuckDonald playlist?

A: Glad you asked! [8] Yes, there is. [9]

Update (1/11/2018)!

Q: Surgery updates?

A: Well, I’ve just about lost the fucking genetic lottery and have learned that I’m positive for the BRCA-1 mutation [10]. Carriers of this mutation have a 55-65% chance of developing breast cancer in their lifetimes, as well as a 39% chance of developing ovarian cancer. According to the best estimates, I have a 33% chance of developing breast cancer in my other breast within ten years if I don’t have a double mastectomy, so that’s what I’m doing, followed by reconstruction. And as soon as I turn 35 I’ll have my ovaries removed also. They won’t do it earlier because of the risks of early menopause.

Also, I’ve named my ovaries Eric and Junior. You’re welcome.

Q: I’ve noticed “he” in reference to (multiple?) doctors. Do you experience any empathy gap with male, presumably boobless, docs? Has it bothered you at all?

A: My oncologist and plastic surgeon are both male; my oncology surgeon that I haven’t met yet is female, and so is the one I met and really disliked and asked to switch from. But besides that I also interact with female providers pretty often, most notably my oncologist’s nurse practitioner. I haven’t noticed any gap. My oncologist and the nurse practitioner are both fantastically empathic and clinically astute, and great listeners too.  I think you’d be more likely to encounter an empathy gap at a lesser institution than OSU Wexner.

Q: Is a genetic test for BRCA1 standard now?

A: Only if you have a family history of breast cancer, or if you get it very young like I did. It’s so rare to get breast cancer at age 26 without a BRCA mutation that they’ll test you for it.

Q: I have wondered why you have to delay the hysterectomy portion of your surgical treatment plan. Is it simply a “you might want babies” thing? How do they square that with the fact that you didn’t elect any kind of “fertility preservation”?

A: [It’s an oophorectomy, actually, not a hysterectomy.] Nope, it’s entirely because of the risks of early menopause, which are pretty serious and include shit like increased risk of heart disease, bone density issues, and the rest of that whole basket of crap. On the other hand, the risk of developing ovarian cancer before age 35, even with the BRCA mutation, is so low that it’s considered a reasonable medical tradeoff.

Q: In your sick lit post, you said cancer YA books were harmful to you and the people around you – that they didn’t actually provide help for a young cancer patient. Is there a flip side of that? In other words, were there resources (other than medical resources and your family/friends) – books, groups, articles etc. – that you did find useful after your diagnosis?

A: Yes! These include: everything provided to me by my doctors, legit websites like the American Cancer Society and the National Breast Cancer Foundation, resources provided by organizations targeting young people with cancer (namely, Stupid Cancer and the Young Survival Coalition), this random blog I found, this other random blog I found, and some local support groups. I’ll be attending YSC’s national summit in Orlando in February and I expect that’ll be super helpful too.

Q: I’m wondering how cancer treatment impacts your narcolepsy/ narcolepsy treatment (and any other chronic medical issues you have)? I’m guessing your other illnesses don’t just… take a vacation when you’ve got cancer, but that they also have to take a backseat in terms of treatment priority?

A: I was very worried about this at the beginning, but my oncologist said that there’s a good chance that the fatigue from narcolepsy and the fatigue from chemo won’t “stack” because they’re different neural pathways. This seems to have been the case. Although I’m obviously more tired than usual after chemo, I don’t feel more sleepy than usual unless I’ve been given a medication that induces drowsiness (i.e. Benadryl during my most recent treatment).

My narcolepsy also isn’t nearly as much of a concern right now because I’m getting help that…also helps with that? For instance, having people give me rides to things because I’m too tired from chemo is also extremely helpful when I’m also too sleepy from narcolepsy.

Q: Can you have hormone replacement after the oophrectomy?

A: I haven’t asked about that because it’s just wayyy too far in the future, but unfortunately I’m guessing not. My particular cancer was estrogen-positive, which means I’m basically not supposed to do anything to increase my body’s estrogen level ever again. That includes birth control, although that will soon stop being a problem.

Q: Will insurance cover genetic testing for relatives now or are they still on their own?

A: I think so, but thankfully money isn’t a problem for them when it comes to that.

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[1] https://en.m.wikipedia.org/wiki/Cyclophosphamide

[2] https://en.m.wikipedia.org/wiki/Doxorubicin

[3] https://en.m.wikipedia.org/wiki/Paclitaxel

[4] https://en.m.wikipedia.org/wiki/Thinking,_Fast_and_Slow

[5] https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3651660/

[6] https://www.drugs.com/zoladex.html

[7] https://open.spotify.com/album/6ttCxEGqI0tX85k80YPYNu…

[8] Nobody asked this.

[9] https://open.spotify.com/…/…/playlist/67It8E6kC5M3ddB2l9Krl6

[10] https://www.cancer.gov/about-cancer/causes-prevention/genetics/brca-fact-sheet#q2

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Everything You Ever Wanted to Know About Having Cancer