This is the third installment of a series by Katy. Below are the previous articles:
Well, here we are…and by we, I mean me…here I am. It’s been a bit since I’ve updated so let’s start with the present: I’m at home (a lot). I’m fucking bald, hopefully as bald as I’ll ever be. I’ve started my second round of chemo. So much has happened, so let me try to fill you in.
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After my lumpectomy, they sent that lil’ ‘ol lump, along with one lymph node, off to be tested — to find out the cancer’s M.O. (ie, slow-growing, fast-growing, aggressive, etcetera). At the same time, they also sent some of my blood off for genomic testing. They have the ability now to test your genetics to find out if you have an elevated risk of certain cancers (whether or not you have a family history), breast cancer among them. Knowing you have this genetic mutation (X-Men?) can help determine what treatments your doctor will recommend. If you test positive, that’s when they strongly recommend double mastectomy and possibly ovary removal. Based off of my initial biopsy, this was a slow growing cancer and the plan was to perform a simple lumpectomy with some follow up radiation. But just to be sure, we waited for both tests: the genetic screen of the lump and my own genetic screening.
Waiting. It’s always waiting. But I was feeling ok. I had the lumpectomy finished; it wasn’t too painful of a recovery. It was pretty interesting really. They make a small incision along your areola (the scar fades better behind the darker tissue, and just blends in). Also, since they’re removing a 2-inch lump, they “rearrange” the fatty tissue a bit to get your breast back to a more natural shape (no one wants a giant dent in their tit). But again, it went well. My doctor said the lump was removed with clear margins – meaning no cancer cells were seen at the edge of the removed tissue, and they hadn’t seen any sign of cancer in my lymph nodes in the MRI – the one sent out for testing was just to be absolutely sure.
Things were looking ok…..you know, for having cancer.
But, as they do, things change.
We received the lump’s test results back first. Good news: no cancer in my lymph nodes. Bad news: the initial biopsy did not represent the whole lump. From the tests performed, they now knew that I had a fast-growing, aggressive cancer. This meant, despite the clean removal of the lump and the clear margins, there was the possibility that the cancer had already sent out more cells that could begin a new cancerous lesion elsewhere. Some cancers can only flourish in certain settings and some can flourish anywhere. Mine was the “flourish anywhere” type. This now bumped up my treatment plan: I had to undergo chemotherapy treatment and as soon as possible; our way of “nuking” any potential wandering cancer cells (along with many of my own).
This is when I meet my oncologist. He wanted to start chemo as soon as possible but were are a few steps to take before we started. I needed to have a port placed. The port is like a direct line or easy access for IVs and it’s easier and not as painful as searching for veins (chemo can damage smaller veins). I was told my port would be my new best friend. Best friend might be a little strong, but I realized once I started getting chemo how much easier this was when I watched people around me who lacked the ports. I also elected to get full body scans to make sure there were no hidden growths anywhere in my body. And since I expressed to my oncologist that I was undecided about having children, he gave me a referral to a fertility clinic so I would know my options in that department.
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Now. I haven’t gone into this much yet but, here’s the deal. My type of cancer feeds off of estrogen, which means the doctors have to cut off my body’s supply of the hormone. No matter what my treatment plan is going to be, at the end of the day (and treatment) I will have to take an estrogen blocker (a pill, I think) for at least 5, and possibly up to 10, years. These estrogen blockers cause someone my age to begin going through premature menopause. Depending on the age you begin taking these estrogen blockers and depending on how long they’re needed, you may still be young enough to resume getting your period after treatment. Next, if you do wish to have children, the doctors recommend waiting until at least 3 years (my oncologist said 5 years was better) after the end of your treatments (chemo, radiation, whatever your plan may be). Not a surprise, pregnancy increases all your hormones exponentially, which then increases your risk of a recurrence of cancers. You see the pattern here…hormones feed cancer cells.
Now let’s add chemo to this picture. Chemo affects your whole body; it attacks all fast-growing cells, which include many of your body’s own native cells (this is why your hair falls out — hair follicles are made of fast-growing cells). There’s no way around this. For women of “childbearing age”, the worry is that chemotherapy may damage your ovaries, causing infertility. These were the options presented to me:
- If I was sure I didn’t want children, removal of the ovaries is an optimal way to cut off estrogen and progesterone production.
- In the case of not knowing whether I wanted kids, one option is to see a fertility specialist and harvest eggs for future use.
- Again, not knowing about wanting children, I can take my chances (I seem to remember my chances were 50/50) that my ovaries would come out the other side of chemo a-ok.
Considering the latter two options, during chemo I would be given a monthly shot of a hormone that would tell my brain to shut down my ovaries, stopping their production of estrogen and progesterone, which is basically and very crudely called medical/chemical castration. But, the shutting down of the ovaries during chemotherapy is what can potentially protect them from getting damaged. Their growth rate would be slowed down — remember chemo attacks FAST growing cells. Again, chances are 50/50.
Anyway, within about a week and a half’s time, I had a small surgery to get my port “installed”, had multiple body scans (one involved a freaky radioactive injection), and Jared (remember, he’s my significant other) and I visited the fertility clinic. The fertility clinic experience, in itself, may be a whole other story, but our conclusion was, with my time limit (starting chemo in a week) I either had to decide right away to launch a very tedious and very, very expensive process (which may or may not be viable in the end), or to just shut my ovaries down and take my chances. I opted for option B.
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On November 15, I started chemotherapy. Round one, for me, is referred to as “AC chemotherapy” which consists of two different chemo drugs, Doxorubicin and Cyclophosphamide. I received the dose every two weeks, with a total of four sessions. This is a chemo that will commonly make your hair fall out. Like, your whole body hair: head hair, armpit hair, pubes….I keep waiting for my leg hair to fall out but it seems to be in for the long haul. Luckily, I’ve managed to hang on to some eyebrow and eyelash hair. Also, not every single hair falls out, so you get a good full-body mange look going. This chemo can also cause mouth sores, or in my case, a very sensitive esophagus (think fast reproducing cells and that’s where you’ll see the most impact). When I told my doctor’s assistant that I was having terrible heartburn and acid reflux, I accidentally said I’d have to stick to “white people food” aka, no spice. She hasn’t let me forget saying that.
Currently, I’m in my second round of chemo, on a different chemo drug call Paclitaxel. Also every two weeks, four total sessions. It is a different drug but mostly yields the same side effects, just for different reasons. As of this writing I have two sessions left. I’m definitely feeling progressively worse and for longer after each session. One of my new great fears, neuropathy, is a side effect of this new drug that I hadn’t experienced before.
Shortly after I started chemo, we got the results back from my genome test: Negative. I do not have a genetic mutation that gives me a predisposition to cancer. Which means I do not NEED to have a double mastectomy or have my ovaries removed. But in the next two months, I have to decide my next treatment steps. I can do radiation (which honestly, sounds terrifying), call it good enough, take my estrogen blockers and monitor closely for the next 5-10 years. Or I can take the preventative measures of ovary removal and/or double mastectomy. Because as someone who’s already had cancer, my chances of having another cancer in my lifetime are slightly higher than normal and both of these preventative options greatly reduce that risk.
So. No matter what choice I make, my life has been altered significantly and I’m starting to realize this is something I’m going to have to deal with, in one way or another, for the rest of my life (took me long enough, eh?).
So, for right now, I’m home. A lot. Because I’m bald as fuck and vanity is a bitch. I look in the mirror and don’t recognize myself. I’m so fucking pissed some days and I feel like my body has betrayed me. Some days I just cry because I don’t know what else to do. I feel selfish for not working: feeling not physically up to it some days, but most days just not wanting to be directly in the public eye and having to answer everyone’s questions all day long. And now I feel like I’m going to miss out on having kids, even though I’m not even sure I wanted kids in the first place. I feel too young (to have cancer) and too old (to have kids) all at once. I’m afraid I’m going to lose my sense of humor about this because as I’ve felt shittier and shittier, and also realized this is my new reality, it’s gotten a lot less funny and harder to make light of.
I wish I could point out some bright spots, and I’m sure there are some that I’m forgetting at the moment (thanks, chemo brain), but all in all, this keeps feeling like a series of “WTF?!” moments.
What the fuck did I do to deserve cancer?
Why the fuck do I have to make these life-altering decisions?
Why the fuck can’t I just live a ‘normal’ life?
These questions really don’t resolve anything and are questions I’m sure tons of people ask themselves in many given life realities.
I do have moments of inspiration and hope. Some days I get lost for hours on the internet in survivor blogs, articles, and photos. I’ve done interviews with local nonprofits to be used as a reminder of the humanity behind cancer for the “money people”. I’ve participated in focus groups for other local charities to help improve their relevance and usefulness. I also hope, that by sharing my experiences, it helps others and makes the cancer subject less taboo.