I’m excited to announce that as of September 1st, 2022, I’ve become Co-Coordinator for the Chicago outlet of the Young Survival Coalition!
For those of you who don’t know, Young Survival Coalition is an organization geared toward providing support and community for young women who have been diagnosed with breast cancer before age 40.
As an individual who was diagnosed fewer than two weeks after I turned 27, this organization’s mission is incredibly important to me and aligns with why I created Candidly Cancer in the first place. The statistics behind breast cancer in women younger than 40 shows the need for a community like YSC.
Breast cancer in young women has historically been underrepresented in most discussions surrounding “who” gets breast cancer. While cancer at any age takes a toll on the bodies and minds of the people affected, young women face higher chances of being diagnosed with more aggressive cancers, receiving less funding and research toward how young adults are affected by breast cancer, greater financial and relationship stability concerns, and longstanding issues with body image and mental health.
Since 1998, Young Survival Coalition has grown from a single group out of NYC to an international nonprofit with over 170 local Face 2 Face networking groups (one for which I am now a co-coordinator), an online community, and a conference specifically geared toward young women who have breast cancer.
As a Coordinator for the YSC Chicago F2F network, my responsibilities include planning events for our local chapter so other young women who are either going through treatment or have previously gone through treatment for breast cancer have opportunities to meet face-to-face, get to know each other, grow a community, and build friendships!
I’ve always had an affinity for event planning and coordination; now I get to do it for other young cancer survivors and thrivers. All this is to say: I am so thrilled to be the newest Face 2 Face Coordinator for the YSC Chicago F2F network, and I’m happy to be able to volunteer my time and event coordination leadership skills to such a wonderful organization.
Want to help YSC and young survivors or thrivers like me? Donate to YSC today.
Hearing the news you have cancer is a fucking nightmare.
Hearing the news you don’t have cancer anymore is a fucking relief.
And sharing the news online is a great way to raise awareness about cancer, especially in the adolescent and young adult (AYA) community.
That said, an uncomfortable online trend I’ve noticed over the past year or so is people who have never had cancer making posts/statements about them…still not having cancer.
Yeah, I wouldn’t believe it either unless I saw it myself. And I have. At least four times in the past 12 months. What might this sound like?
“My mammogram came back clear! Yay for me!” And they’ve never had cancer before.
“I had a scare but actually it was nothing, and I don’t have cancer, haha isn’t that cool!” With the undertone of I didn’t have cancer before, either, but I also don’t now.
Or saying they or someone they know is “cancer free” when they were seen for a benign, non-cancerous lump and were never previously diagnosed with cancer. So they can’t actually be free of cancer that they’ve never had.
I know you might be confused as to how this is “bad,” celebrating not having cancer, and normally I’m a “live and let live” kind of gal, but it comes off braggadocios to celebrate something you didn’t actually overcome. How can you celebrate (publicly) “not having cancer” when you already didn’t have cancer?
It’s like telling someone whose house recently burnt down “Omg I left the stove burner on and I thought my house was going to burn down! But thank God it didn’t!” Would you do that? Would you knowingly comment some celebratory brag about something you didn’t actually endure?
I get wanting to “raise awareness” about getting your mammograms or other preventative scans and screenings for cancer, but it’s in really poor taste to brag about not having cancer when there are people out there who aren’t so “lucky” to go in and have a routine scan with no bad news.
Or when actual cancer thrivers (see: those with incurable cancer and those in active treatment) and survivors go in for scans and celebrate their clear scans as a win…
Because for them, IT ACTUALLY IS A WIN. BECAUSE THEY HAVE A HISTORY OF CANCER. So NOT having cancer *again* is something to brag about.
But you having clear scans on routine check-ups or a “scare” that wasn’t actually anything to begin with isn’t a “celebration” inasmuch as an expectation. Even if you have a family history of the disease, bragging online about not having cancer when you haven’t had it before is a REALLY WEIRD FLEX – whether you want to hear that or not. And it’s disrespectful to read for people who do or have actually had it.
Look, we’re all thrilled you’re healthy, but damn if it doesn’t feel like a slap in the face to those of us who’ve actually had cancer or are currently enduring treatment for it. We weren’t so lucky. We didn’t get to just breathe a sigh of relief and carry on with our days. And some cancer thrivers never will.
If you’re announcing your scan results because you want to “raise awareness” about cancer, you don’t need to brag about not having fucking cancer.
Instead, you can say, “Hey everyone! Remember to get your annual mammogram!” “Check your breasts on the first of the month!” “Donate to/support X fund for people undergoing cancer treatment!” Don’t make it about you not having cancer when you never fucking did.
From the inside looking out again, it seems obvious to not say these things to someone undergoing treatment for cancer. But from the outside looking in, you probably wouldn’t know any better. And we know you have good intentions, but a looooot of these statements come across flippant and tone deaf.
What not to say to someone with cancer
Here are a few things you should probably – no, DEFINITELY – not say to any cancer patient ever. Not even your bff. Not even your mom. Not even your coworker. Nobody. Not ever.
Oh, did you do something to your hair?
Yeah, I got cancer.
But you look so good with short hair!
Thanks, I guess? It wasn’t a choice, and I don’t feel comfortable with it…but thanks.
At least you have a good shaped head!
What??? What compels you to say such a thing?
It’s not that bad – at least it’ll grow back!
Cool. Let’s cut your hair off then if it’s no big deal!
I could never do chemo.
Cause I had “do chemo” on my bucket list, right?
Have you tried [insert holistic, unproven, bullshit] instead of chemo?
Look, I’ll take all the woo woo stuff you’ve got, but I’m still doing chemo!!!
I had cancer, too, but I cured it holistically!
No you didn’t lol.
Well at least you have the good cancer!
No cancer is good cancer. No, not even cancers with higher survival rates. All cancers are bad, even if some prognoses are worse.
You don’t even look sick!
That’s cause when I’m feelin’ like absolute garbage, I stay home. If you see me out and about, I’m feeling OK that day.
You’re so brave / I could never do what you’re doing.
I know, this one’s tough to hear. But I’m not brave. I’m doing what I have to do. Brave is performing in front of a crowd. Brave is jumping out of a plane. Doing medically mandated treatments is just… necessary. And you could do it, too, if you had to. But let’s hope you don’t have to.
You’ll be fine!
Will I be fine? I know you mean well and don’t want me to worry (and you don’t want to worry, either), but this is such a brush-off way of saying “don’t worry about it!” – especially when we don’t know if I will, in fact, be fine.
I understand! My [much older relative] had cancer, too!
As someone on the outside of things (i.e. not actually receiving treatment or dealing with a diagnosis yourself), no, you don’t actually understand, and their cancer isn’t my cancer. You might be “familiar” with some cancer-related things, but you don’t understand what *I* am going through. No, not even if your relative or friend went through cancer treatment. You do not understand how it feels to be in the position of someone with cancer. (And I hope you never do.)
Oh, also they died.
Bro what? That really fills me up with hope, thanks!!!
Omg, don’t joke about [cancer-related thing] like that!
If you’re not the person with cancer, don’t tell the person with cancer how to cope with their own fucking cancer. I’m gonna share some dark humor memes and joke about cancer because I can, and if it makes you uncomfortable, I don’t give a shit.
Good thing you’re done with treatment and can go back to normal now!
There is no “normal”. Having cancer will always warp our idea of what “normal” is, and we’ll always be worried about the cancer coming back. I’m trying to recover and be in a place where I was before cancer, but assuming everything’s just…back to the way it was is, in a word, asinine.
Check back soon for another installment of “what not to say to other cancer patients even if you, yourself have/had cancer”. Because believe it or not, some of the most cringeworthy things have come from the mouths of other cancer patients.
They don’t tell ya this when you get cancer, but once they have a suspicion that you’re sick, shit moves fast.
So fast that you don’t really have time to think about any of it.
I often get asked how it happened.
How’d I find out? When did I find out? And of course – do I have a family history of cancer? (No, and many breast cancer diagnoses don’t have family history tied to them, either.)
And I usually repeat the same thing over and over. Sometimes without much detail, sometimes with more.
But it’s been a year now since this whole shit show came to head, so I decided I’d write down a little timeline of the pre-diagnosis to diagnosis stage for y’all. Consider it a cancerversary gift from me to you.
2020: The year that, when asking “what’s the worst that could happen?” – you better be prepared to find out
2020 was a lot of things for a lot of people. But it wasn’t so bad for me. Well, not until the very end.
December 2020: Age 26, 2 months until my birthday
Noticed a lump in my left breast.
I might have been showering. I might have been taking my bra off for the night or putting it on at the beginning of the day. Who knows? I don’t remember. But I felt something.
It felt weird, but I didn’t think it was cancer. Not even for a second. Like, why would I? But when the lump didn’t go away after a few days, I asked my boyfriend to check it out. He’s more paranoid than I am about things regarding health, so when he said I should go to the doctor, I said maybe after the holidays and kind of shrugged it off. But he was adamant. So a few days later, I asked my mom to feel the lump. She said the same thing. Still, I didn’t want to try to get a doctor’s appointment a week before Christmas, our anniversary, and the new year, so I scheduled an appointment for January. It was next year’s problem.
2021: Last year might have been the worst year of your lives, but not me!
If you thought 2020 was bad, I can do you one better!
January 2021: Age 26, 1 month until my birthday
January 11: Go in to my normal clinic, see a nurse practitioner. Tell her what’s going on. She’s nice, but she of course doesn’t think it’s cancer either.
I’m young, I’m healthy, I show no physical signs of illness besides the gigantic lump in my breast (which is not visible to the naked eye – you’d literally have to touch it to “see” it). She tells me to monitor it. Check once a week, not more than that. It’s probably just an inflamed milk duct. Wait until my next period cycle. If it goes away, great. If it starts growing, hurting, call her. Come back in a month to see her for a follow-up regardless.
Gives me this informational sheet that basically says it’s not cancer. Most breast lumps aren’t cancer, it reads. Right. Except for the ones that are.
February 2021: Age 26, 10 days until my birthday
February 15: A hell of a day in and of itself, but who knew just how more hellacious my life was about to get? I just had my performance review. It went great; it always did. But I was upset because I didn’t get the compensation I was looking for with my promotion. I was in a bad mood.
And I had to go to the fucking doctor on top of it. And I hated going to the doctor. What were they going to tell me? Oh you’re fine, don’t worry about it, whatever! Thanks for wasting your time coming here today!!! Because that’s what they always did to me. It was nothing. I was fine. Pay your copay. Go home.
So I got to the clinic. I checked in. I chatted with the same nurse practitioner. This time, she was a bit more serious. The lump hadn’t gotten any worse in the past month, but it hadn’t gotten any better, either. She told me she was going to refer me to breast imaging so they could tell me for sure what’s going on. Still, she was of the mindset that it was probably a cyst, nothing to worry about. I didn’t have any of the “signs” of breast cancer – no puckering of the skin, no discoloration, no discharge, no visible changes – nothing. Except for a gigantic fucking lump.
From this point, I don’t remember if they called me to schedule the appointment or I called them, but I think the latter. I told them I couldn’t meet until after March 2nd because I was out of town that weekend. My boyfriend and I were heading to Williams Bay, WI, for a birthday weekend getaway. And I wasn’t about to deal with this shit during my birthday.
…so they scheduled me for March 3rd.
March 2021: Age 27, 6 days after my birthday
March 3: They scheduled me for a mammogram and ultrasound. When I went in, I had to fill out one of those medical history forms. Wasn’t much to fill in. I can’t remember much, but I think I was in and out within 30, maybe 45 minutes. Boy does it hurt when your breasts are squished between plastic plates for imaging purposes.
The notes from the visit on the medical portal read:
You were seen on Wednesday March 3, 2021. The following issues were addressed: Lump of left breast
I can’t remember if they told me right then and there that I needed to schedule a follow-up, or if they called me later that day, but they told me I needed to come back for another mammogram and ultrasound.
The notes on the test result portion on the portal read:
MAMMOGRAPHY HIGHLY SUGGESTIVE OF MALIGNANCY Indeterminant spiculated palpable mass in the upper outer left breast. Ultrasound-guided biopsy recommended.
I started to worry. I started to worry a lot.
March 9: I came in again for another mammogram and ultrasound. And a biopsy. They decided to do a needle biopsy during the ultrasound. I was very scared. I don’t remember if I asked any questions. I don’t remember much after the visit.
The notes from the visit on the medical portal read:
You were seen on Tuesday March 9, 2021. The following issues were addressed:
Left breast mass
Abnormal mammogram of left breast
a b n o r m a l – every girl’s favorite word to hear about her breasts.
The notes on the test result portion on the portal read:
ULTRASOUND GUIDED BIOPSY Ultrasound guided biopsy of a left breast mass. Pathology revealed invasive ductal carcinoma, grade 3, which is concordant. Ultrasound guided biopsy of a left axillary lymph node. Pathology revealed metastatic disease, which is concordant. Surgical consultation recommended. Further evaluation with bilateral diagnostic mammogram and/or MRI recommended.
But wait! There’s more. I also got this gem:
A. Left axillary lymph node:
Portion of lymph node with metastatic carcinoma.
B. Core biopsy, left breast, 2 o’clock:
Invasive ductal carcinoma, Nottingham score 3+3+3. (See comment)
Now, I know how to fucking read, but let me tell ya – I was so confused by all of this. All I really got was “metastatic carcinoma,” which I knew meant cancer that had spread. I was, at this point, self-teaching cancer terminology. I didn’t want to tell my boyfriend. I didn’t want to tell my mom. I didn’t want to give any weight to these words. I knew “metastatic” was code for “has spread” and I conflated it with “terminal” – because in many instances, metastatic = terminal.
So here I am fucking freaking out because the geniuses who invented medical portals think it’s cool to send test results to patients before doctors get a chance to talk results through with them.
March 10: Some lady calls me from the clinic I go to. “Hey, we need you to come in to discuss your recent test results.” I already knew it was cancer. “You can just tell me over the phone.” “No, we need you to come in. Can you come in today?”
No, because I fucking work??? I can’t just drop my life on a dime because y’all don’t want to tell me over the phone. I was irritated. Just fucking tell me I have cancer. I already KNEW by this point. All the “hush hush” bullshit was getting on my nerves.
But I’m not as rude to people on the phone as I am when reflecting on a piss-poor patient experience a year later. So I talked to my managers. Told them what was up. Scheduled myself to go in the next day to ~ discuss my results ~
March 11: It was a Thursday. I don’t remember the weather. I don’t remember what I was wearing. My dad was off of work. My mom was off of work. My boyfriend took the day off. We rode in together to the clinic.
I knew why I was going. I asked if I could bring somebody in over the phone before I went inside. No, because of COVID. They said you could bring somebody in if you were a minor, elderly, or discussing surgery.
I knew why I was going. But I didn’t feel right saying, “Well I’m about to be fucking diagnosed with cancer so I think that’s a good enough reason for me to bring somebody in.”
So I went inside alone.
I waited. Maybe 10 minutes, maybe 20. The same nurse practitioner from before came in. No smile. Low tone. Giving off a depressing aura. I hit record on my phone’s voice recording app. I didn’t want to forget anything she said. And she talked in a fucking circle for six straight minutes until she finally blurted out that “the biopsy came back positive for cancer”. Oh yeah? You think?
“Okay,” I said. “So what happens next?” I didn’t cry. Well…not at first. I had already resigned myself to the fact that it was cancer.
“Do you have anyone here with you?” “Yeah, but they wouldn’t let me bring somebody in.” “Do you want to call someone to come in?” “Yeah.”
They only let me bring one person in and I had to choose who out of the three most important people to me I would be bringing in to tell the worst possible fucking news of my entire life.
I called my mom to come in. I had already text my boyfriend to let him know.
I don’t remember how long we stayed inside the room. I remember I kept asking questions about what happens next, this and that. But she told me the cancer center would call me to make my primary appointment with “the cancer team,” and that they would answer all of my questions. And of course I had a lot to ask.
We left the clinic. I went outside. I ran to my boyfriend. He jumped out of the backseat, we hugged, and we cried. My dad got out of the car, we hugged, and we cried.
Curious how you can make a difference for the breast cancer community during Breast Cancer Awareness Month (October 1–31 annually), but not sure where to start?
Here’s a rundown of seven key ways you can make an impact by doing more than just wearing pink.
1. Donate or raise money
Donations are the number one way to help people diagnosed with breast cancer. Donating money to breast cancer foundations helps fund research hours that can lead to better diagnostic tools, medication approval, treatment testing, and hopefully – someday – a cure. Women undergoing treatment for all breast cancer, but specifically metastatic (stage 4, terminal) breast cancer need funding urgently to get more research hours to hopefully find a way to eradicate the disease.
Here are a few major foundations and associations you can donate to:
You might not have money to donate to others, and that’s okay. But you may have time, which is a valuable asset as well. Some of the foundations above also have volunteer opportunities for events like breast cancer awareness walks. You can also volunteer at the cancer center at your local hospital.
Here are a few volunteer opportunities you can join:
While it seems like there are tons of resources and “awareness” out there, unless you’re impacted by a diagnosis or by a family member or friend undergoing treatment, you probably know a lot less about breast cancer than you think.
Breast cancer is not pretty and pink. It’s not “the good cancer,” as people often say. While most breast cancers are treatable and often curable, studies show that women diagnosed at a younger age often suffer higher chances of death, later stage diagnoses, and more aggressive forms of cancer than those diagnosed later in life.
With this information in mind, even if you’re personally unable to donate money or time, sharing resources and knowledge is free. Here are a few sites and their uses for breast cancer (and other cancer) fighters and their support systems:
Because treatment plans for breast cancer can vary – and not all people have the same side effects – you can make wellness packages for specific treatment stages or regimens.
For example, if someone undergoing chemotherapy is having trouble eating, but manages to keep soft foods down, a care package consisting of jellos, puddings, instant potato packets, microwavable rice, and stovetop mac-n-cheese might be a good option. Similarly, if someone is scheduled to have a mastectomy, check what stores offer mastectomy bras and buy a gift card for them to help them toward the purchase of a new bra.
5. Amplify voices of breast cancer thrivers/survivors
Along with sharing resources, amplifying voices of women affected by breast cancer is another helpful way to do more. Three groups of people who often get overlooked in discussions surrounding breast cancer are adolescent and young adult (AYA) patients, metastatic breast cancer (MBC) patients, and men with breast cancer.
AYA breast cancer patients
As with most cancers, age is a risk factor for breast cancer. The median age of diagnosis in the United States is 63, which leads most coverage of breast cancer to focus on mothers and grandmothers, not youthful, energetic 20 and 30-something-year-olds. You’ll see TV ads about breast cancer, featuring women in their 40s/50s with teenage or adult children walking besides them at an awareness walk.
But you never see ads in the media about the 21-year-old woman in her junior year of college, getting diagnosed like her mom did a few years earlier. Or the 27-year-old woman climbing the corporate ladder, working her way toward buying a home when she gets diagnosed out of the blue. Or the 32-year-old new mother who thought the lump in her breast was related to her breastfeeding her new baby.
You never hear stories about young women getting breast cancer. But AYA cancer patients are trying to change that narrative.
Sites like Twitter have become a wealth of free information on AYA breast cancer shared by thrivers, survivors, and medical professionals who are concerned with educating the under-40 crowd on how to do self breast exams and identify bodily changes.
Here are a few AYA breast cancer resources you can use for yourself and share with others:
@TeamShan, Breast Cancer Awareness for Young Women National Charity President Lorna Larsen, RN
@EK_Drake, Cancer researcher, PhD, and co-founder of the #AYACSM hashtag (standing for Adolescent and Young Adult Cancer Social Media)
Candidly Cancer, A website dedicated to helping newly-diagnosed AYA women with breast cancer at all stages navigate the treatment process
Metastatic breast cancer patients
MBC patients are terminal, but the length of time someone can thrive while undergoing treatment for MBC can be months or years long. You may have seen TV commercials about metastatic breast cancer and the drugs people can take to work toward reducing the progression of the disease.
In most of these ads, the women presented are fun-loving, jovial, and rearing to go to live their lives to the fullest without any debilitating effects. But in reality, many women with metastatic breast cancer are exhausted, worn out, and want to be realistic about their diagnosis and strength while undergoing treatment.
While people may not understand the “lack of positivity” surrounding MBC, it’s important to highlight the straightforward, realistic, cut-and-dry outlook some MBC thrivers share on social media.
Here are a few MBC voices to amplify on Twitter:
@LibbyMBC, a young mother fighting MBC and advocating for others fighting the disease
Although men have significantly lower risk of contracting breast cancer than women, one in every 100 breast cancer diagnoses are attributed to men, making up for 1% of all cases. Low, but not nonexistent. Men whose grandmothers, mothers, or other blood relatives have had a previous breast cancer diagnosis are more at risk than those without.
The risk factors for breast cancer in men are generally the same as with women, with risk factors including age, family history of the disease, genetic mutations, exposure to radiation, and certain conditions in the testicles.
One renowned voice advocating for male breast cancer patients is @malefitness, a Stage IIIb breast cancer and prostate cancer survivor.
6. Don’t fall for the “wearing pink = raising awareness” mindset
If you got 100 breast cancer survivors in a room together and asked what they feel about wearing pink in “support” of breast cancer, the response would be split. Some women love the bright, cheerful, girly vibe that surrounds breast cancer awareness. Others do not.
Because breast cancer isn’t glamorous and cute like ads and social media make it seem, many survivors rally against pinkwashing, which is a marketing tactic businesses use to encourage people to buy their products during Breast Cancer Awareness Month. Companies may sell pink-hued clothing or accessories in “support” of breast cancer, but if they’re not also donating a percentage of proceeds to a breast cancer foundation, they’re justbenefiting from pinkwashingat the expense of breast cancer patients.
You can still totally wear pink, but if you don’t already own pink clothing and want to purchase something new, try looking for brands that are partnered with a breast cancer foundation and are dedicating a portion of their proceeds to it.
7. Get tested and don’t ignore the signs
As indicated earlier, breast cancer is frequently touted as a “mom/grandma/auntie” disease that you don’t get until you’re in your late 40s or older – and it’s often waved off as something you can only get if you have a family history of the disease.
This is an outdated misconception, and there’s data to prove it. While only 5 percent of breast cancers diagnoses are attributed to women in their 20s and 30s, the disease is becoming more prevalent among the under-40 crowd. Because testing isn’t recommended for younger women, the disease is often missed or overlooked until it’s in a later stage, which can be more difficult to treat.
Most medical professionals won’t preemptively test women for breast cancer while in their 20s or 30s unless there’s family history or medical factors that indicate a person might be predisposed to the disease. Because of this, you need to be your own advocate and know the signs of breast cancer before it progresses.
You have a voice. Use it for good.
There you have it! It’s not impossible to help, and you have options. Whether financially able to donate money, physically able to donate time, or in a position to help inform others by sharing information online and in-person, we need your voices to amplify ours.
Breast cancer may not affect you directly now – and it may not ever. But chances are that you or someone you know – family, friend, or acquaintance – may be diagnosed with some form of cancer down the road. So speak up for those who are battling this disease now as if it were you or someone you love going through it. Your help truly does more than you know.
As many of you know Breast Cancer Awareness month begins today, October 1st.
As a woman undergoing treatment for breast cancer, my perception of all things breast cancer has changed over the past year. Because of my new ‘status’ as a breast cancer patient during BCA month, I’d like to inform y’all about some things relating to breast cancer and support that you can take into consideration during the month of October (and always!).
Check your breasts
Women, check your breasts. Every month. If something feels off, go to the doctor. Get them checked out. It can happen to you. One in 8 women will get breast cancer in their lifetime. And more women are getting breast cancer earlier in life. I found my tumor at 26 and was diagnosed at 27. Despite the recommendation that only women over 45 get regular mammograms, this isn’t just a cancer that happens to grandmas, moms, and aunts. It can happen to any woman at any time. And it does.
Stage 4 needs more
While breast cancer is often highly curable, metastatic breast cancer is not. It is fatal. Women may live for many years with the disease, but so far there is NO cure for metastatic (also known as Stage 4) breast cancer. Stage 4 needs more funding, research, and recognition. Metastatic breast cancer awareness day is October 13th annually, and you can learn more about the disease and how to help.
Watch where you buy your pink “support” gear from
If you want to wear pink in support of breast cancer awareness, go for it! But first find out whether where you’re buying pink gear from is actually donating part of the proceeds to breast cancer research foundations or not. If not, find a store that is and buy from them instead.
A lot of companies like to make a quick buck off of people who either think they’re being supportive and don’t know better or off survivors/thrivers looking to buy some gear for themselves. We don’t want this. Wearing pink without actually donating to foundations that help breast cancer patients doesn’t support a damn thing.
Instead, look for a BCRF (Breast Cancer Research Fund)label or partnership acknowledgement on a company’s website. If you don’t see something like this (below), from the Loft, on a company’s page anywhere – but they ARE selling “pink” gear – they are NOT donating to breast cancer research.
Here are a few other companies who are donating proceeds to BCRF or other breast cancer organizations:
Pay attention to what you say and how you say it to women battling breast cancer
Don’t tell someone who gets diagnosed with breast cancer that they’re *lucky* because they got the *good* cancer. While again, breast cancer is highly treatable, treatment – especially for those who have to endure chemo – is painful and life-altering.
I dealt with significant hair loss despite cold capping, severe face and arm rashes, gastrointestinal issues that caused me to drop 40 pounds over four months’ time, nail discoloration, and medication-induced side effects like vomiting, diarrhea, hot flashes, and fatigue. And really, no cancer is “GOOD”.
Also, we don’t want to hear how your cousin’s friend’s grandma “had breast cancer, too!” …and then died from it.
If you’re talking about someone close and personal to you who died from breast cancer (a direct relative, a friend), that’s different. But still, talking about death could be triggering to breast cancer patients – ESPECIALLY those with mets. Ask before sharing a story about someone who died from the same cancer someone is currently going through treatment for.
Do your research to help others
All it takes is a quick Google search: “breast cancer awareness month donations” for multiple options to pop up. If you can’t afford to donate, share a post on social media and help bring awareness to others. Breast cancer isn’t something we should brush off because “oh everyone knows about it”. We need you to speak up, donate, and participate.
And if you’re feeling generous, donate to my Making Strides of Chicago page. All proceeds go to the American Cancer Society. On October 16, 2021, I’ll be walking alongside my boyfriend and the team at Advocate Illinois Masonic hospital in acknowledgement of my fight and the fights of other thrivers and survivors.
Okay, not starving. I have weight to spare. But I am so motherfucking hungry I can barely put it into words.
After every chemo session (I’m done with 4 out of 6 at time of writing), there’s a window of 10–11 days where I can barely eat anything because it is physically painful to do so, and everything tastes disgusting or has no flavor at all. It’s a weird side effect I didn’t realize could happen before chemo, and it’s something that people who aren’t experiencing cancer treatments will never be able to comprehend. And thank God for that.
Let me try to explain it for you in hopes you never experience this awful feeling. And if you’re currently undergoing this regimen and reading this blog, I feel your pain. I am with you.
While on chemo, specifically the TCHP regimen, your tongue goes numb beginning the day after infusion. When you’re at the hospital, it’s ok to eat if you feel inclined. You can eat while undergoing infusions, but as the day progresses, you will start to feel less interested in eating.
One of the things this chemo regimen does is change the way food tastes, from flavors to textures. So by the time you get home from an infusion, you might be hard pressed to eat. After 2 of the 4 sessions I’ve had so far, I have eaten when I got home from chemo same day. It is very situation-dependent.
But by the next day, your tongue starts to feel funny. I’ve previously described the feeling like a sock on your tongue, and there’s no better way to put it.
You’ve put a tight sock on your tongue, but you need to eat. But every piece of food you place on your tongue feels like a foreign object. A flavorless object occupying space in your mouth. On top of that, there’s something stuck in your throat. It’s not food because you haven’t been able to get anything down. It’s another foreign object. Lodged there. You can’t move it. And even drinking water won’t help. Actually, drinking water might hurt. Because water is also disgusting.
That’s how eating feels for nearly two weeks after a chemo infusion.
Your throat feels full and like it’s burning, your tongue doesn’t work, and your stomach absolutely hates you.
Foods are too sweet. Too greasy. Too spicy. Too salty. Too sharp. Too rough.
Food smells amazing. But the taste? God awful. Avocados? Bitter. Ice cream? Like you licked the inside of a bag of sugar. Potatoes? Greasy, gross, vomit-inducing.
I tried making myself some pico de gallo about 5 days after my last infusion. I used one serrano pepper. They’re hot, but nothing I can’t normally stomach with ease. The minute one diced pepper touched my tongue, I started gagging hysterically and had to down a full bottle of water. Spice is intensified; sweet is nearly unbearable. All of it is horrible.
Because of my inability to eat, I drop about 10 pounds in body weight after each chemo session. I’m currently down 28 pounds since the start of infusions, with another five or so days to go until I can eat with normalcy after this session.
“That’s not 10 pounds! You’ve been through four sessions! You’d be down 40 otherwise!” Good job. I usually gain back about ~5 pounds the final week before the next treatment…because like magic, my tongue works again.
Some people on other chemo regimens have noted their insatiable hunger. I guess you could say I’m insatiably hungry, too – I just can’t act on it. Some chemos require you to take oral steroids as part of your treatment plan. I am on Dexamethasone (an oral steroid) the day before, day of, and day after chemo. But after those three days, I don’t take any steroids, so I don’t have this bottomless pit stomach feeling others have experienced.
The non-eating isn’t even the worst part!
On top of not being able to eat, you’re plagued with awful, debilitating fatigue. Because you can’t eat, your energy and hydration levels are at unhealthy lows. You’re exhausted. Your head hurts. You’re dizzy. You can barely stand up straight. Want to walk a flight of stairs? Fuhgeddaboudit. Everything takes so much fucking energy reserve and you have so little because you’re not eating. And you can’t even FORCE yourself to eat without possibly getting sick in the process.
Fun fact: Some people online have told me to just “suck it up and find something to eat!” like I wouldn’t have already tried that if I could. I detest vomiting, so anything I can do to prevent myself from throwing up is what I’ll do, but thanks anyway, internet advice-giver. P.s. I haven’t vomited once since on chemo and hopefully can make it through the rest without doing so.
There’s a mental aspect to it, too.
The mental toll of not being able to eat food is so much harder than I’d ever have thought. My mind is consumed with what I cannot eat. Days drag by because what might normally be considered “mental” breaks for meals just don’t happen. I’ve broken down crying at least once every window between chemos because I can smell and see food, but can’t taste or eat it.
For me, food is a part of life. So not being able to look forward to a hot meal at the end of the day or casually grab a donut and coffee for a fun and fast breakfast is so taxing on my mind. It might seem crazy, but our lives literally surround food. One of the many joys IN life IS food. Taking that joy away makes the days drag. Makes my emotional state so numb. So disinterested in everything.
You know how you might joke that you look forward to your morning coffee? I can’t even do that. I have barely consumed any caffeine since April because it’s too bitter or hard on my stomach. I would love to wake up and have a sweet roll. An egg sandwich. Log off work and go out for spontaneous sundaes or fraps at Starbucks.
But everything has to be so strategic, so deliberate. I’m already planning ahead what I can eat and when once these next few days are up.
So what do you do when you can’t eat?
I torture myself, naturally.
I spend way too much time on Instagram and TikTok watching cooking videos, dreaming about the food I can’t even dare to eat. Over the past few months, I’ve followed a couple of amazing chefs whose food I drool over for days on end:
I spam-send my boyfriend videos of mouthwatering food, continually telling him what dish I want to eat next. He tells me to make a list so we can remember after each chemo session. Lately, I’ve been on a Mexican food jag with some spicy Asian noodle dishes sprinkled in between. Pretty on par for what I normally want to eat, to be fair.
Somewhere toward 6–7 days after chemo (today, as it were), I start feeling more myself. I ate a banana and a mini bag of 100 calorie pretzels. A whopping ~250 calories or so for my day. But hey, it sure beats not eating anything. Sometimes I’ll get the urge to cook for my family, then immediately regret doing so as I can’t taste anything I’m cooking. Happened last night when I made one of my favorite go-to quick dishes, copycat Panda Express chow mein noodles.
By the end of the week, around 8–9 days post chemo, some taste starts coming back. It comes back rather gradually. Using the 1–10 scale for 10 being full-flavor, I hit about a 5/6 a week and a half out from infusion day. About 12–14 days post infusion, it shoots back up to about an 8 or 9. Then, for 7 glorious days, I can eat food.
Do you have food recommendations since we have to eat *something*?
Yes, but they vary per person. A few things that have worked for me are:
Plain or cinnamon apple oatmeal
Mac and cheese, depending how many days it had been since chemo
Slim Fast shakes (not too sweet, lots of protein)
Cheese, though it still tasted weird
Plain white rice
Plain rotisserie chicken, again, depending how far out from treatment
What foods do you recommend staying away from?
It varies per person, but here’s a quick list of things I wouldn’t dare touch during chemo + 10 days:
Fried foods – for the love of God, don’t do it
Anything spicy (even if you can handle the hot stuff like I normally can)
Meat, especially beef
Coffee or caffeinated drinks
Candy, ice cream, pastries
When you can taste food again, what do you eat?
Anything and everything my body can handle. A few takeout/dine-in highlights over the course of chemos have been:
As you can see, I have a few food trends: Mexican food, nachos with brisket, Chinese food, and wings of various sorts. And as spicy as I can handle it on good days.
What sucks is because I have to eat so little over the first 10 days, I can’t eat as much as I’d like on the days thereafter. A few times I’ve pushed it, but usually I have more food than I can handle, which results in leftovers I might not necessarily finish.
Anyway, this ode-of-sorts to food is a way for me to reach out to fellow people undergoing TCHP to say: you’re not alone. This part is fucking horrible. I’ve never experienced a worse feeling. Some people might try to compare not being able to taste foods when their nose is stuffed up or when they have a cold or the flu, but I promise you – nothing is similar to this.
Please try to eat something small so you can stop feeling like utter shit. I can barely move or function on the days I can’t get anything down, so please try your best. Forcing water and taking your anti-nausea meds might be your best bet. So far bananas, strawberries, and other berries have been my saving grace.
And for anyone else just reading along, thank you for listening to me bitch about how hungry I am and how awful this side effect is. Next time you’re around someone undergoing chemo, ask them how they’re feeling food-wise. If it’s a good day, offer to buy them lunch! ♡
Figured now was as good a time as any to share this news…
After my last chemo, I started shedding a LOT of hair despite using the DigniCap scalp cooling system. What’s more, I developed a huge bald spot at the front of my hairline, and I got so frustrated that I had my mom cut all of my hair off in early May.
With my third chemo coming up tomorrow, I figured I should finally share what my hair looks like now. It’s not great, but it’s what I have for now.
I will continue using the DigniCap scalp cooling because despite developing a bald spot at the front and shedding a ton of hair, I so far have not developed additional bald spots. My hair mean(s/t) the world to me. It was absolutely beyond devastating to have to make this decision.
I am not happy that this had to happen. But without DigniCap, I would be completely bald right now otherwise. And I know this for a fact. So I’m extremely grateful to have the hair coverage I still do currently. I am also extremely blessed to still have my eyebrows and eyelashes as well as a mostly full head of hair, even if it is super duper short right now.
I’ve NEVER had hair this short in my life, so this was a complete change for me. I am so worried about the next four treatments. I have no idea how I’ll fare, if I’ll lose more hair, if I’ll lose my eyebrows or lashes, or what more is going to happen. Every new round of chemo is an absolute shitshow of “what else could go wrong this time?”.
All I can do is pray, hope for the best, and lean on all of you for your continued support. I can’t wait for time to pass to get healthy and have a full head of hair back in the future.
Anyway, just wanted to share that with all of you to rip the bandage off and so you’re not all shocked when I share pics from the next chemo session.
This outlines my first chemo, April 15th, 2021 and the weeks after (leading up to chemo 2).
Please note: If you are squeamish to hear about bodily functions, side effects, and other not-so-pretty parts of cancer – one, why are you here? – but two, stop reading right now – because I’m not sugar-coating anything for people who really want to know the ins and outs.
Day of infusion (at hospital):
The day of infusion was fine. Because I have a port-a-cath where the infusions are given (as opposed to intravenously), I didn’t have any site pain. I was there a long time. 7:20 a.m. until 6:45 p.m. It was the longest day for me due to my chemotherapy and HER2+ medications regimen: TCHP (taxotere, carboplatin, herceptin, perjeta).
I also was doing a cold cap, by DigniCap, which is a cooling cap system with intent to help cancer patients mitigate or prevent hair loss (with a 50% rate of keeping your hair deemed “successful”). This process adds an additional 2–3 hours of total time onto the infusion session as your head needs to be kept cold before, during, and after the chemo drugs are placed in your body.
My mom came with me (I can have 1 guest, masks on) and we watched TV, talked, ate, etc. It was nice to have her there with me so I wasn’t alone. I also went online sporadically, but didn’t do any work. You should not be working through your chemo – don’t let anyone tell you otherwise.
Day of infusion (at home):
When I got home, I didn’t really want to eat although there was a nicely-prepared dinner waiting for me, thanks to my dad. I ate some mashed potatoes and salad, drank some water, and that was it.
Day after infusion:
The next morning, I felt awful. It felt like there was a clump of food in my throat (despite only having eaten salad and a bite or two of mashed potatoes). This feeling endured for nearly a week. I tried to eat normal food and I just couldn’t.
There was a lump in my throat, like constant acid indigestion or reflux. I have a super high tolerance for spicy foods (thanks, Mexican genes!), but even black pepper was irritating as hell on my throat. So for days, all I could eat was soft foods. Jello. Apple sauce. Pudding. Oatmeal. For a week. And some days, nothing at all, or just water.
They really like to force you to drink electrolyte-rich liquids, like Gatorade. But Gatorade tastes like pure fucking salt when you’re in the midst of chemo. It was awful. I fucking hate Gatorade now.
Another thing I noticed was the awful sensation on my tongue. Something was wrong. It felt like there was a sock or a glove on my tongue and I couldn’t taste anything.
Week after infusion:
The first Monday after chemo was an absolute BITCH. I could not keep myself awake for the life of me. I was so lethargic and literally kept falling asleep at my desk. Learning this, I decided to take off subsequent Mondays-after-chemo going forward to recover (my infusions are Thursdays, with days off on Fridays & Mondays from work).
About two days post-first chemo, I started getting a super hoarse throat. I could barely speak. I drank various teas, had lozenges, drank tons of water, didn’t talk or sing much. About 7–8 days after, it got better and cleared up.
By the end of the first week (7 days), I had a check-in appointment with the “chemo teacher,” who basically was just there to check in with me and make sure I was doing ok. After looking at me and seeing I looked in good spirits, she basically was like “you’re good, see ya!” which was fine with me because I FELT fine at that moment.
Other than severe dehydration from diarrhea – yes, it’s wonderful – I was doing ok all things considered. My tongue was super dry (as she noted) and she just mentioned to up the hydration. Noted.
After one week, I:
Had all my hair intact, even after my first hair wash (shower every day; wash hair 1x/week)
Had lost 9 lbs due to lack of eating and dehydration
Was experiencing acid reflux/indigestion every single day
Had diarrhea every single day
Could not taste anything at all – no foods had any flavor and my tongue felt weird as fuck
Started getting a weird skin rash on my face (cheeks, forehead, chin) which I didn’t think to bring up to her because I’m an idiot!
2 weeks after infusion:
The week following chemo was a lot better than the last, though my tongue and the flavors of foods was still not completely there. However, I was finally able to stomach whole foods, like rice, chicken, etc. There were still some foods that tasted awful to me even though they shouldn’t have – carne asada (oh, the horror) and tomato sauce (think pizza). Carne asada tasted sour, and tomato sauce tasted bitter. Two of my favorite things. It was shit.
Very early on, as I alluded before, I started noticing a rash on my skin. I tried ignoring it because I thought I was overreacting or something, so I went on with life as usual.
Until it started getting worse – fast.
It started getting out of control. I was like, is this was cystic acne is like? No, really, it got bad, and I’ve never had “bad” acne before, so I couldn’t compare it to anything else. I figured ok, I’ll put some topical medicine, put some cold ice packs, it’ll be fine.
Narrator: it was not fine.
Two days later it was a nice, sunny, 85-degree April day in Chicago, and I decided to work outside in the afternoon with my cat. Already having been told to avoid the sun, I stayed under the backyard umbrella and had plenty of water with me.
If you can recall, I’m still doing cold caps at this point, meaning I can’t put my very heavy, very thick, ass-length hair up on my head during the super hot summer like I’m used to. So I just have to sit pretty and hope that I don’t broil to death, even out of the sun, under an umbrella.
I finally emailed the chemo teacher on the medical portal. She never replied. Very efficient! So I decided to email my nurse navigator, who’s an absolute fucking saint. Immediately after I emailed her a series of pictures – including these, which got WORSE when I was outside in the heat, magically – she called me within 3 minutes to be like, “Hey friend, that’s not normal!!!”
NOW we were getting somewhere.
What’s not normal, you ask? Oh, just this:
So my nurse navigator rapid-fire called my oncologist who got in touch with me immediately and told me it was an INFECTION, not some random chemo skin rash! So turns out I wasn’t crazy, but that this also wasn’t “normal” either. Some skin irritation is possible with chemo. BUT THIS IS NOT NORMAL. SO IF IT’S HAPPENING TO YOU, REACH OUT ASAP.
To remedy it, they prescribed me Clindamycin (pills) for a week – an antibiotic. As it stands, the skin cleared up within the week and it was back to normal, supple, non-bumpy-what-have-yous for me. Just the regular 20-something year old acne flare-up here and there.
I was also given a topical Clindamycin cream in case of any flare-ups. Fingers crossed, but so far, so good.
The rest of this week was generally uneventful, which is pretty great if you ask me. I was able to start eating full meals again, but I screwed myself out of having any alcohol (which you can totally do when you’re on chemo, fun fact!)…so long as you’re not on antibiotics at the same time!
After 2 weeks, I:
Had not lost additional hair even after washing it a second time
Was able to eat with more normalcy
Had discovered and been given a solution to the skin infection
Was not having diarrhea every day for once
3 weeks after infusion (days before 2nd infusion):
Just as you start to feel good again, you get ready to feel like shit all over. Once you’re like “damn, I feel solid,” next thing you know, chemo’s just around the corner. So this week I tried to live it up. Was able to eat whatever. Tried to dress a little nicer, more like myself.
I did, unfortunately, notice some hair coming out. As a reminder: I hadn’t lost basically any hair to this point, over 2 weeks into the process.
So I posted on the DigniCap Facebook support group and got generally positive responses, basically saying what I was losing wasn’t much to shudder at. So I assumed they were right and just tried to live and let live. But day after day more started coming out – in droves. It was getting bad. Really bad. Balding bad.
On an unrelated note, I have very kind people in my circle, so someone at work (on a different team than mine) bought my lunch the day before chemo started (May 5th) up again. I ordered Panda Express, chow mein and kung pao chicken. One of the best fucking meals I’ve had in awhile. Can’t wait to eat some again before the next session!
That same day, of course, was Cinco de Mayo. While it doesn’t have a particular significance to most Mexicans like me, it was an excuse to indulge on good ass food before I couldn’t eat again. So we ordered from one of my favorite local spots. Got nachos, tacos, the works. It was good to fully eat and taste every last bite.
After 2.5 weeks, I:
Could eat like normal and taste foods up to 90% of normalcy
Tolerate more spice than before
Had a clear face thanks to the Clindamycin
Began losing a lot of hair, tons of shedding, and a bald spot began forming right at the center of my head