Fast facts (if you don’t have time to read the full post): I guess August flew by? I celebrated one year of being infusion chemo free on August 4 and I am fast approaching my chop chop anniversary. Things have been hard lately, not going to lie. Emotionally and physically things are changing again and I feel like I am getting closer to understanding more about the new version of me.
Countdown to last day of oral chemo: 160 days
TO THE LONG VERSION!
People talk about survivorship as this magical land full of promise and healing and good vibes and I am just here to tell you that it is anything but fucking that. Survivorship is like traveling without a compass or Google Maps. You’re missing half of the exits to get off the highway, there’s a baby screaming in the back of the car, and you forgot to pack underwear. You’re excited for the destination but you’re also as impatient as a six year old complaining, “Are we there yet?”
Turns out that survivorship is not a tropical vacation destination like they make it out to be during active treatment. (I use “they” loosely because it refers to providers, people rooting you on, and those on the other side.) Okay, that might be an exaggeration, but everyone wants you to get through treatment to get to the other side because it is better. The cancer should be “gone”and you should be happy again! But now that I think of it, survivorship is laced with toxic positivity and really shitty tequila. Just when you think you’ve reached the promise land, you get out of the car and you’re still in the middle of the fucking desert.
Granted, these feelings ebb and flow but I am shocked that I was led to believe that getting through active treatment was the hard part. Don’t get me wrong, getting massive doses of poison pumped into you is not a great time either. The side effects are awful. I don’t have any rose glasses on about that. But treatment is out of your control! You are doing what you are told and going through the motions. Survivorship is a completely different beast that is constantly evolving. The training wheels are off. Nobody is telling you how to do things or what to do next. One minute you’re staring at a friendly cemetery ghost and the next you’re battling it out with demons straight from hell. Just when you knock one out, another comes out of the shadows.
In short, the last month-ish has been hard emotionally (and a little bit physically, too.) I truly believe that our bodies remember anniversaries and significant moments in time that go beyond our consciousness and unconsciousness. Things were going okay around my chemoversary (August 4), but as I approach my mastectomy anniversary (September 15), my body feels angsty and upset.
To be fair, my oncologist switched my hormone blocker at the beginning of August from anastrozole to tamoxifen. She sold the switch under the guise of less joint pain (which I was not really reporting any but ok….) and better for my type of cancer long-term, but with more ~mood swings.~ When she said this, I recalled my initial mood swings when I started zoladex injections and laughed fondly over the memory of crying over pancakes. Instead, I am crying before exercising every morning and having fits of rage. Life just makes me feel a bit uneasy overall. I feel a bit on edge.
I saw my oncologist last Thursday and reported the mood swings and additional joint pain in my knees and weight gain when she asked how I was feeling on tamoxifen. She offered to up my antidepressants (which I declined) and told me to just keep exercising because the weight gain was because of menopause. That perplexed me because I was doing JUST FINE on anastrozole in terms of mood, body confidence, and joint pain until I switched. My routine hasn’t shifted all that much since starting the new medication. I am exercising almost every day and I am still in therapy. What gives??!
I also started experiencing some intense pain in my right forearm and hand last week, beyond the occasional soreness I get from not stretching my arm or chest enough. I was pretty swollen when I saw my oncologist and expressed concerns about lymphedema. Lymphedema is swelling due to build-up of lymph fluid in the body. Lymph nodes act like a drain in your sink. If the drain is clogged, the fluid cannot drain. It is very common for folks who have had radiation and for breast cancer patients. I thought I was keeping it at bay given how active I am, but surprise! This is not an area of expertise that I know much about nor was I educated on. And my oncologist just kind of brushed me off! It was kind of shocking.
I had concerns mostly because it is super uncomfortable and I have this insanely fear that it will increase out of of my control and I will have a permanent balloon of an arm. Lymphedema also increases your risk of infection in the swollen area and it makes me really insecure and self conscious. She sent a referral out to get help in managing it after I practically begged her, but she seemed unbothered and unconcerned which annoyed the hell out of me. I left my appointment feeling deflated.
Luckily ranting on the internet does have its perks. I posted a bit about my arm and several people reached out with tips and tricks to help with managing the swelling and pain. Honestly, what did patients do before social media to get additional information on how to survive? But on the flip side, I feel like an annoying bitch on the internet randomly appearing to complain about the never ending problems I have and then disappearing after that. I just simply don’t have capacity for much anymore.
I’ve been trying to get the root to that feeling… that feeling of not being able to show up for others the same way I did before my diagnosis. I was a “yes” person. I was willing to help with anything and everyone and often times my social calendar was packed to the brim. When I first started experiencing this distancing (for a lack of a better word right now) after finishing active treatment, I thought it was just residual effects from enduring a year of complete shit and it was a feeling that would fade away. But it is still here.
Group conversations on Facebook messenger have gone unopened for months. Part of me wants to hop in, but I have been gone for so long I question if I even deserve to be in those spaces anymore with people who have chosen to keep in touch while I have withered away in the corner. My phone is clogged with unanswered texts. The colorful chat bubbles taunt me. I have notification after notification that sit unaddressed in other social media apps.
Why is it so hard for me to participate in connection?
I’ve been trying to pinpoint it in therapy and I’ve talked with other patients and it just seems to be a common thread. Our priorities have shifted to us. We no longer are in positions of giving everyone complete access to ourselves. Our functional time is limited and finite. And we are figuring life out of again. It has left me guilt ridden lately. I don’t know how to explain this experience to cancer muggles. Things just kinda suck right now and I thought it would suck less, but it still sucks. And I am sorry. I wish I could show up the ways that I used to, but I am genuinely struggling.
And then there is also the feeling that I feel like I talk about my caner too much. I’ve joked about it feeling like a personality trait (which I genuinely hope people don’t think that) but it is a massive part of my life now and impacts literally every facet of who I am. From my emotional and physical state to the never ending appointments and advocacy work I feel drawn to, it is just sorta…. there. Mix that with feelings of feeling like I am too much for others and feeling alone, it has become the perfect storm of ceasing communication across the board.
I came across this quote on one of my cancer social pages and thought it summarized my feelings perfectly:
I think the hardest part of cancer treatment is at the end, when everyone assumes you’re “cured” and you no longer need their help. You’re in your weakest, most devasted state, plus you no longer have the mission you had when you began this journey: to kill the cancer. The cancer is toast, but so are you, and now, like a soldier at the end of war, you need help putting yourself back together, only everyone has gone home since they assume the war has been won.
Anonymous
As much as I try to force myself back into a semblance of routine, it is still painfully hard to navigate and I am struggling and for those who have been harmed by my inability to show up in the ways I used to, I am so sorry.
Really. I am so sorry.
I am trying to find solutions to return and I want to believe they exist and are in my future. I don’t have a timeline. So, all I ask is be patient with me. Don’t forget about me. Keep trying to throw the buoy out to sea. I am drowning and soon enough I will gasp for air and grab on for dear life.
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Because I was not sure how to transition back to some interesting cancer factz, I put those asterisks so we could all compose ourselves! How kind. And I wanted to end on a cool note. Last month, I donated some of my blood samples to a new blood test that was recently approved by the FDA called Signatera. This test is a highly sensitive and personalized molecular residual disease assay (MRD) using circulating tumor DNA (ctDNA), custom designed for each patient to help identify relapse earlier than standard of care tools.
The Signatera Residual Disease Test is a custom-built blood test for people who have been diagnosed with breast cancer or other solid tumors. It can detect molecular residual disease (MRD) in the form of circulating tumor DNA—small fragments of DNA released by cancer cells. So basically, we submitted a tissue sample from my tumors from my surgery last year and current blood sample to build my unique test. Every three months I will have additional blood samples submitted to monitor any changes in ctDNA levels, which can help inform us if my cancer is shrinking, growing, or coming back.
This is a helpful tool for us to use in addition to scans which over time I will receive farther and farther apart as long as I remain NEAD. Of course we are not using this as our only tool for monitoring, but it is a fucking cool tool that makes me feel like I am living in the future. And because of this test, I am extra grateful I kept my port because ya girl still hates needles!
I was supposed to have baseline information at my last appointment, but I guess we accidentally sent the biopsy sample from February 2022 instead of my larger surgery sample from September 2022. Now we have to wait longer for results, but I guess no biggie since we know based on my recent July scans that I am currently NEAD.
Science is cool.
Today’s song lyrics of the day are brought to you by Justin Dust.
“I was left to my own devices
And now I am in deep
I’m dreaming of paradises
But I’m not asleep
Bring me alive
I need you to bring me alive
I need you oh oh oh oh”
madisonhatescancer 