I’m a Survivor

Goodness gracious warriors! Time just flies when you’re having fun. That’s what survivorship is? Fun, right? Well not really, not all the time at least. And that’s okay. You can’t experience joy without some pain.

Medical

I suppose we can kick it right off with some medical talk. As you know, I’m on two drugs to keep the cancer away, letrozole and lyparzia. Letrozole works by not allowing my body to produce estrogen. I take this because the cancer I had was very estrogen positive, meaning it thrived off of estrogen. The thought that is with no estrogen, the cancer can’t grow.

The biggest side effect I’m having from Letrozole is dryness. Everything is so dry, I might just change my name to Sahara, because it’s a damn desert up in here. It doesn’t seem to matter how much water or fluid I take in, what moisturizers I use, eye drops, all of it. I just feel like eternal sand paper. But like most things on this cancer journey, it’s not the worst side effect in existence and for that I’m grateful.

The other drug (Lynparza) works by exploiting deficiencies in the cancer DNA repair pathways, thus killing the cancer. I’ve had a few side effects from this one, including some intermittent nausea, appetite and taste changes, and occasional neuropathy. Considering one of the side effects of menopause is weight gain, I’m not too mad at the lynparza side effects. I have yet to gain any weight post active cancer so I’m happy with that.

The lynparza and letrozole both can cause fatigue and headaches. The fatigue really gets me sometimes. I have the desire to do a lot of things, but I just can’t. It gets really frustrating and affects every aspect of my life. I have to constantly be aware of what I’m doing, plan ahead, and sometimes just say no. It’s a huge mental game and I often find myself frustrated that I feel like I have the energy and abilities of an 80 year old in a 33 year old’s body.

Headaches

One of the scarier side effects has actually been headaches. Shortly after I started the new medication, I started to have headaches. Every single day I’d wake up with a headache. I actually forgot what it was like to not have a headache for a while.

The first thing Dr. Wells had me try was a medication holiday; taking a short 3–4 day break from each of the meds that might be causing the headache. This was quite welcomed and I enjoyed feeling like I had more energy and a lot of things tasted right. But alas, neither medication holiday really cured my headaches. This of course lead to fears of metastasis, which led to a brain MRI.

This is another one of the very frustrating things of survivorship. Every ache and pain leads to fears of metastasis or a new cancer. If the root cause of an ache or pain can’t be found, then its off to a scan.

Luckily, my scan was all clear. This has led me to believe that the headaches are caused by multiple different things including: medications, posture at work, blue light exposure, and who knows what other things I haven’t even thought of. I’ve been working hard to make modifications including adjusting my chair at work, getting a laptop stand, and using my blue light blocking glasses. I also started acupuncture. All of these things (including acupuncture) have drastically reduced my headaches. I’ve gone from having a headache every day to every couple of days. This is amazing.

Lymphedema

One of my biggest fears from day 1 of diagnosis was lymphedema. I had a sneaking supiscion I was developing chest lymphedema, but was told to wait and see if it was lymphedema or prolonged swelling from radiation. Well today, it was decided by my physical therapist that it’s most likely mild lymphedema. It doesn’t really hurt. Just annoying and causes numbness.

To work on this, I’m going to start going to physical therapy every two weeks, wear my compression bra, wear kinesiology tape to promote the flow of the lymph waste in the right direction, and do manual lymph drainage massages daily. What was a very terrifying thing for me in the beginning has turned into just another standard thing to deal with. I’m not sure if I should be happy about that or not.

Finances

Another big thing that cancer affects is finances. Not only am I making drastically less than I was prior to diagnosis, I also have the added cost of all of these different medications and side effect management tools.

Luckily, the oral chemo cost ($7,000+ for 60 pills) counts towards my insurance deductibles, so I’ve already met those and am not paying out of pocket for anything. But it’s a bit scary to think in the future years what I’ll have to pay when I’m not on it. Just another way cancer royally fucks up one’s life.

What’s the Point?

I feel like I’ve done a crap ton of unloading and bitching here today. Which is true because I have. But there’s a larger point to this bitch fest. It’s to showcase the extreme toll that cancer takes on someone.

Even after we survive the initial close call with death, there is still so much more to navigate and manage. It’s overwhelming. It’s time consuming. It’s terrifying. I’m lucky that I get off work at 3:30P and can make most appointments without needing time off work. But sometimes I have to get off early, and that always makes me feel inadequate as an employee when I already am feeling inadequate as a functioning and healthy human.

The emotional toll is real. The mental toll is real. The financial toll is real. The health toll is real. All of it is so real and not talked about enough, but I’m here to talk about it.

I want to continue to educate. To continue to be vulnerable and open so that maybe you, my dear warriors, can take something away from all of this and show a survivor some grace someday.

In the mean time, as always, have a magical day.