My Blog
Of All Things Cancer Took From Me, This Might Be the Worst
I don’t like dwelling on things I’ve lost since being diagnosed with a rare and deadly cancer in 2019. It feels ungrateful to complain when so many cancer patients don’t get the privilege of living. I am lucky, I know this. But cancer does take a toll. I became post-menopausal at 34, I lost my reproductive organs and will never have kids, my immune system is damaged, I am still neutropenic following chemotherapy and radiation, and my mental health is in a constant state of anxiety.
Despite all of that though, I am generally happier than I’ve ever been. Yes, cancer also has silver linings. A greater appreciation for life, clarity on how you want to live your life, plus, a renewed sense of love and gratitude for the world and everyone in it. Those aren’t nothing.
But the one thing I can’t get over losing … sex.
I think cancer patients don’t often talk about their sex lives because many are in the throes of treatment and just trying to make it to the next day. But once the dust has settled and you rejoin the world as a person, sex is often the thing you leave behind (along with body parts and random organs).
Prior to cancer my husband and I had amazing sex, like all the time. So much so, people would make fun of us for loving on each other so much. It was fun, easy, and enjoyable. Then cancer came. I lost my uterus, my ovaries, and 1/3 of my vaginal canal. What people don’t realize is that when you have sex your vaginal canal expands like an accordion. A symphony of hormones and elastic tissue work together to create an incredible sexual experience. Without that accordion, you’re left with a painful, useless tunnel that now only measures three to four inches in length. So right off the bat, you’ve got a storage issue.
The only time I’ve ever heard this spoken about publicly is when Camille Grammar from Real Housewives of Beverly Hills was lingerie shopping after her endometrial cancer and revealed to her friend that she too had a shortened vaginal canal from the radical hysterectomy. Her friend’s response was something like “that’s still plenty of room”. Except, it’s really not. It’s no longer elastic like an accordion, it’s static and damaged and has a sign that says “stay the fuck out” because anything that goes in there causes an immense stabbing, burning pain.
Besides losing length, you also lose what I’m going to call “vitality”. My tissue was blasted with radiation and poisoned with chemotherapy. I also had the privilege of undergoing brachytherapy, which is basically a dildo filled with radiation that is shoved into your broken, damaged cavity and causes you to cry uncontrollably. In other words, it’s a war zone. Obliterated. “A dead stump” as one doctor told me.
Like a plant in need of water, your reproductive tissue needs estrogen to survive, without it, it can wither and die. It’s called vaginal atrophy. The tissue becomes thin, brittle, and dry. It happens to many women post-menopause and it happens to cancer patients who lose their ovaries, endure pelvic radiation, or are on hormone suppressors (like breast cancer patients). All of this causes painful penetration — if you can even get it in (which lots of times, you cannot).
I haven’t spoken much about this, but sex after cancer is hard. Really, really hard. It’s a trifecta of menopause, butchered organs, and a nuclear bombing of your nether regions. You no longer have the parts you once did — but the desire is still there. It’s kind of like being blue-balled on a daily basis and then feeling guilty about feeling sorry for yourself because you’re supposed to be happy just to be alive! After all, you could be dead, right?
I’ve decided to speak openly about this because my husband tweeted about it to his 17k followers over the weekend (with my permission of course). He was excited because for the first time in 18 months we had something that finally resembled penetrative sex. And it was awesome. Afterward, we both lay in bed in shock, wondering out loud “Did that … was that … omg I think we … yessssss”.
I feel very lucky because my husband has never made me go faster than I wanted to go, he’s never complained about not having penetrative sex (I use the word “penetrative” because obviously we still have “sex” of other varieties), and has always reminded me that he loves me no matter what.
But losing the ease of sex takes a toll. No more ten-minute quickies — sex is a full-on production now. Lots of coconut oil, lube, suppositories, vibrators, pre-sex dilation, etc. Not only that, moments of passion are broken up by logistics, “Hold on I’ve gotta insert the lube egg (this is a little ball of lube that disintegrates inside your vagina and then leaks out and ruins your sheets) or “Where did the charger go for the vibrator?” (Vibration lessens the pain as the canal stretches). And don’t get me started on dilators … because I HATE THEM.
Wow, Taryn, this is really getting TMI, why are you writing about this?
Well, for the last 18 months I’ve felt pretty alone. I get jealous watching people on TV have sex, I look at women with their “hormones” and “working vaginas” and feel envy. I’m lucky because I can be 100% open and honest with my husband, and I know there are women out there who can’t. So I’ve decided to rip the Bandaid off. Sexual dysfunction after cancer is normal and there are no easy answers. My husband and I work at this EVERY. WEEKEND. We try new toys, new positions, new lubes, new rings … anything that could help us. Turns out the thing that helps the most is a mini-vibrator from Amazon that was about $14 (as I said, it dulls the pain). Who knew?
All of this is to say that cancer patients’ sexual needs are often put last by doctors (no doctors have helped me even though I ask about it every time) — mainly because they’re busy trying to save their patient’s life. I get it.
But I also want to get off.
If you’re having issues with sex after cancer please know you’re not alone. And my email is open to help you in any way :)
The Trauma of the Bone Marrow Biopsy
Since my cancer diagnosis, I’ve been through a lot — surgery, port implantation, chemotherapy, radiation, brachytherapy, the list goes on. But last Friday was my very first bone marrow biopsy.
Prior to this biopsy, I had heard horror stories about how painful it is. Luckily for me, my oncologist set me up to have some “twilight” drugs, that would allegedly put me under for the procedure.
Unfortunately for me, the experience still felt traumatic AF.
I’m not sure what it was exactly, but something in me broke during this exam. As I lay on a CT scanner, bare ass up in the air, and medical staff fluttering around me, my anxiety got the best of me. As the scanner raised up — a sign the procedure was beginning — I nervously asked “Am I being sedated? I’m really nervous.” The nurse held my hand and gave me the first dose of Fentanyl. A few minutes later, I heard the drill they would be digging into my back hip in order to extract the bone marrow from my body.
Will I Be Alive In 16 Months? (How To Handle Fear & Anxiety After Cancer)
Every day at dusk I take a walk around my neighborhood along winding horse trails and golden meadows filled with wildflowers. An occasional pine tree offers a sweet smell that reminds me of my childhood. As I contemplate my serene surroundings, I suddenly think “I wonder if I’ll be dead next year?”
If you didn’t know already, I just finished cancer treatment and my particular cancer is rather nasty. The average disease-free survival time is 16 months, while five-year survival hovers around seven to ten percent. The keywords here being “disease-free”, as in women who were told they were “cancer-free”, but died anyway.
This Is Nothing or It’s Your Death
A few weeks ago a friend of mine died of cancer. He was diagnosed a few months after me in the early winter of 2020. He reached out asking for advice on chemotherapy — I did the same thing before starting treatment. I wanted to know all the tips and tricks, and former patients were happy to get on the phone with me for hours as I soaked up every last detail (bring a blanket, get an iPad, take CBD). I was happy to do the same for him. He had a rare cancer too (not the same as mine). We were in this fight together. As the months passed I became NED (no evidence of disease) but he worsened. The chemotherapy wasn’t working, the radiation wasn’t enough. Then, around late summer he told me the doctors had started discussing palliative care. In other words, he wasn’t expected to make it very long. When he spoke of his losing battle he did so with grace and strength. He said he would keep fighting. He was always thankful for small victories and his resolve reminded me to be grateful for mine. He died in October. His death hit me very hard. His Twitter and his Twitch were still active. It’s like he was still there but he was gone. His survival time from diagnosis to death was less than one year.
I’ve Lost Nearly 40 Pounds — And I’m F***ing Terrified
When I was diagnosed with Cancer back in 2019 I weighed around 150 pounds (I’m 5’5”). I always thought I was fat. In reality, I was muscular, like a non-famous Ronda Rousey. I did mixed martial arts, yoga, running, snowboarding, you name it — and I ate pretty healthily (or so I thought). But when The Big C came I went crazy on the restriction because I was fighting a cancer that kills 90% of its targets. I refused to be in that cohort. I fasted 2x a week during chemo and slowly switched to plant-based. After treatment, I was down to 130 pounds. My doctors didn’t love me losing weight, but they also knew how much I was focused on nutrition, exercise, and diet and since they didn’t have a “cure” they let me go after one. (It’s a misnomer that people “just lose weight on chemo”, some people actually gain weight and it’s very dependent on the primary site of your cancer and your side effects.)
A Rare Cancer That’s Killing Young Women
The phone call came on October 11, 2019, a date now burned into my mind. “Hi Taryn, unfortunately, the biopsy showed you have a rare cancer.” How rare and how aggressive were unknown to me at the time. My tumor was only 2cm, but we would not know staging until after a radical hysterectomy. What followed was an onslaught of appointments with various oncologists — one for surgery, one for chemotherapy and one for radiation — and various tests. My PET, CT and MRI all showed only local disease. Everyone had high hopes. We had caught it early. My pap smear a year prior was normal. Everything would be okay.
A few days later they took my cervix, my uterus, one-third of my vagina, my ovaries, my fallopian tubes, and surrounding tissue. Buh-bye future children. I spent four days in the hospital with a catheter in my urethra and an epidural in my back. It hurt to cough, to eat, to sneeze and to go to the bathroom. But I was alive.
Full pathology came back a week after surgery. Not what we wanted. My cancer had spread to one of the 15 lymph nodes they had taken out. That 5mm of cancer shot me up to Stage 3C. I received a final diagnosis of high-grade small cell neuroendocrine mixed with adenoma-carcinoma of the cervix.
My odds of survival … 7%.
It’s a statistical fact that most women who have my cancer will die. Even at Stage 1 the odds of survival barely hit 30%. The odds of recurrence (i.e. when the cancer comes back within five years) sits at 80%. But some people do survive. As my oncologist said, “The cure rate is not zero.”
I think about that every day. The cure rate is not zero. How do I become a part of the 7%? The lucky few who dodge the bullet and live to see the rest of their lives. Is it my diet? My resilience? My will to live? My treatment? Or is it much more random? For instance, were those women always going to live because the DNA of their cancer simply behaved differently? Do they have molecular structures we’re currently unaware of? Am I in the genetic bucket of survivors or those who perished? I’m like Schrodinger's Cat, both alive and dead.
If you ask doctors, they don’t know the answers to any of these questions. In fact, what they do know about this cancer can be summed up in three sentences.
It’s rare. It’s aggressive. It’s likely to come back.
It turns out less than 200 women per year are diagnosed with small-cell neuroendocrine cancer of the cervix. Normally, NETs (neuroendocrine tumors) show up on the lungs or the GI tract. Bernie Sanders’ daughter-in-law just tragically died of neuroendocrine cancer (in general). So did Aretha Franklin and Steve Jobs (of the pancreas)*. They don’t know why small cell sometimes hits women in the cervix. Not only that, the women are usually young.
The median age for small cell neuroendocrine of the cervix is around 40 — plenty of women are in their 20s and 30s. They’re getting married and are worried about freezing their eggs before treatment. Their Facebook pages are full of #StayStrong hashtags, “Fight Like a Girl” memes and prayers. Age plays no role in prognosis. Treatment consists of surgery, followed by 5+ rounds of combo chemotherapy and radiation. Median survival time is around 22 months, despite aggressive treatments. I think about that every day too. 22 months. Pretty soon the hashtags turn to #RememberingTK and #RIP.
In other words, there is no known cure. No treatment that seems to actually work for people and there’s no research or money to save us. Since the cancer is rare, women with small-cell neuroendocrine had to form their own Facebook group, rely on grassroots advocacy, raise their own money and gain support from MD Anderson, a comprehensive cancer institute, in Texas which now hosts a tumor registry in hopes of creating clinical trials. Without those women taking efforts into their own hands (like so many women before them), we might not even know what we know now. For them, I am thankful.
For me, this diagnosis has been a rollercoaster of emotions. Some days I’m confident and other days I imagine friends speaking at my funeral or my husband marrying five years after my death. You know enough time to mourn, but enough time to move on and be happy. Like one of those sad romantic comedies where we learn the male lead lost his young wife to cancer. “Awww,” we say as we dismiss the young, invisible, “woman” who died. It’s the beginning of his love story and the traumatic end of hers. I think about my mom and everything she’s been through. I can’t die on her.
I do know one thing, I am a survivor by nature and hopefully an outlier. I hope that my body can carry me through six months of treatment and prevent further recurrence. I hope that by sheer force of will, a little luck, and one of the top cancer teams in the country (c’mon I still need science of course) that I will be one of the 7%. I see myself growing old with my husband, watching my 5-year-old niece graduate from college, adopting a child of my own one day, and finally moving to the South of France as we planned.
I can see it and I hope the universe can too.
👉I have a GoFundMe to help pay for my intensive cancer treatment (surgery, chemo and radiation), but no pressure. Anything is appreciated ❤️🙏. https://www.gofundme.com/f/help-taryn-beat-cancer
PS if you or a doctor you know have any knowledge or resources related to high-grade small-cell neuroendocrine cancer please let me know.
*There are major differences between high-grade and low-grade neuroendocrine cancer.
Fighting Cancer In the Time Of Covid-19 (When Will This Madness End?)
The world feels like a crazy place right now. A new virus is ripping through the global population and, for the time being, seems unstoppable. A vaccine is roughly one year to 18 months away. All we can do to protect ourselves is hide, wash our hands, and hope for the best. We have to believe that should we catch it, we can beat it — after all the death rate sits somewhere between 1% and 4% (since total population testing is not happening we don’t have enough data to say for sure). Not too bad right? Your odds of survival are actually quite good.
But what if you’re in the 1%?
Welcome to my life. Back in October 2019 I was diagnosed with cancer. My first doctor, based on exam and medical history, said the odds of me having cancer were akin to “winnning the lottery”. My second doctor (because the first would have killed me) said I most likely did not have cancer, but he “really didn’t know what he was looking at” (I appreciated his honesty). By the time my cancer diagnosis came in 7 days after his biopsy he called it “unfortunate” and “unexpected”. There are fewer than 200 cases per year. There are 163 million women in the US. How’s that for odds?
My odds of survival are also terrible — based on outdated data they sit between 7% and 10% (30% according to a small study in Japan). Since October I’ve had to do a lot of soul searching, I’ve had to face death and say “not today” on numerous occasions. Thirty-four, in my book, is too young to die.
But there was a light at the end of my tunnel. If I could make it through six rounds of chemotherapy (~five months), concurrent radiation (25 rounds), plus Brachytherapy (they just added it), I could be cured. Treatment — and surviving it — became my life. I lived and breathed it. I attacked chemotherapy like the nerdy Yalie I was. I read Oncology textbooks, I scoured PubMed for articles, I contacted multiple oncologists around the country and probably annoyed the hell out of my oncology team at UCLA by sending them articles on Neuroendocrine immunotherapy drugs — as if they didn’t, you know, go to medical school and have 1000x the knowledge I did.
We were so close. After many months of treatment, we moved back to LA March 1st to start daily radiation. Then the quarantines began. The CoronaVirus cases started soaring in California. Ten turned to 1000. I was already in self-quarantine because as someone undergoing chemotherapy I was (and still am) immunocompromised and even a common cold or flu could do serious damage. But, before CoronaVirus, I still felt safe. I felt in control. I could undergo treatment, wash my hands vigorously, and let my husband go to the store to buy groceries without a hazmat suit. Even going to the hospital every day didn’t make me fear for my life. Hospitals are relatively safe right?
All of that has now changed. I’m terrified to go anywhere. I’m terrified to send my husband to the store. I’m terrified to get an oil change on our car which we seriously need! One mistake could mean death. And if there are not enough ventilators I’ve seen the medical ethical guidelines, kicking cancer patients off to save others often tops the list. We’re more likely to die anyway right? We won the wrong lottery.
Stress is not good for cancer. Or the immune system. So I try not to break down crying every day but it’s hard. My levels (hemoglobin, neutrophils, etc) are at an all time low (the phrase “blood transfusion” has been mentioned). And to be honest, the situation I find myself in has me questioning a lot of things about life. Why did I have to get the rare cancer? Why do I have to fight a serious illness and a global pandemic at the same time? When can I get a break? The other day I broke down in tears and shouted to my husband “I’m a good person, why is this happening to meeeeee?” Those who know me personally know I have not had the easiest life to begin with — the pile on of cancer and global pandemic makes me think the Universe might *actually* be trying to kill me.
But then, I remember, I have to take a step back. The global pandemic is not about me. Thousands of people have already died, why them? Did they deserve it any more than I do? No, of course not. For the 199 other women fighting my same cancer, why them? For the millions fighting some other horrible disease, or struggling to keep a roof over their heads, or living in fear as they still have to go to work — why them? I think the cold, hard truth we all have to face is that this earth does not revolve around us. And much of what happens to us is random. In some ways, humans are the cancer and CoronaVirus is acting like the chemotherapy — it cannot discriminate against good cells or bad cells — it just kills indiscriminately, knowing the end game is a cure. The air is cleaner, the ozone layer is healing and dolphins returned to Venice canals in Italy. Long after humans are gone, the planet, in whatever state we’ve left it in will persist.
So what does it all mean? All I’ve learned in my cage fight with mortality — and I’m still learning — is that each and every one of us should be thankful for the time we have, the privileges we surround ourselves with (the ability to work from home, to pay someone to do your shopping, or simply to eat and survive), and the ability to show love and compassion for other humans. All humans. It’s time to rise up, show gratitude and help others — even if helping just means STAYING THE F*** HOME! Don’t hoard supplies, don’t stock up on N95 masks that doctors desperately need, don’t price gouge during a pandemic, don’t go out and party or hit the beach with friends, don’t spit on food or deliveries (jeez people), don’t call it a hoax (looking at you Fox News), don’t actively try to kill people or increase the price of ventilators, don’t “not care” because you’re young.
I was young too — and cancer didn’t care. CoronaVirus doesn’t care. In the words of High School Musical “We’re all in this together”, literally. We’re all “social distancing”, we’re all trying to “flatten the curve”, because we’re all at risk. And for those of us who are even more at risk do your part to help us. I can’t make you stay home, I can’t make you not vote for Trump (unless you want to do me like a huge favor), but I will die if you give me this virus. Grandparents will die. Friends will die. Siblings will die. So help your fellow humans — because we’re Stronger Together.
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For those who don’t know, I was diagnosed with Stage 3C Small Cell Neuroendocrine cancer in October 2019 at age 34. There are less than 200 cases per year. There is no research, funding or clinical trials for this cancer. If you would like to learn more please visit https://necervix.com/facts/.
I also have a GoFundMe here: https://www.gofundme.com/f/help-taryn-beat-cancer. (No pressure, anything and everything is appreciated.)
The Collateral Damage of Cancer
If I could sum up cancer in one word I would say “sacrifice.”
As any survivor knows, cancer takes a lot from you and in order to live, you must pay a hefty toll at the sacrificial altar of survival. We sacrifice our time, our jobs, our sex lives, our money, our hormones, our youth, our hair, our future health, and most often our body parts.
For me, that sacrifice meant losing my uterus, my ovaries (goodbye estrogen, hello menopause), my cervix, and one-third of my vagina. However, the whirlwind of cancer — and the prospect of death — has not allowed me much time to mourn what is truly gone. When you’re told the odds of you dying greatly outweigh the odds of you living your number one focus is staying alive.
In fact, “Take it all” is the exact phrase I said when my oncological surgeon explained my radical hysterectomy. There was no time for discussion, second opinions (literally), or fertility preservation. In a 15-minute meeting, I went from being a married 34-year-old who thought she *might* want kids someday to a soon-to-be barren, menopausal cancer-lady.
The fear hit once I got to the hospital’s cafeteria at UCLA and broke down crying — which I assume is a common occurrence. The reality was setting in. My body would never be the same.
I’ll admit, prior to cancer children were not a priority for me and I was very much on the fence. I still had dreams of traveling, drinking Negronis in Italy, sleeping in ‘till 11 am and keeping my bank account above zero. To me, children would put an end to all of this. In fact, caring for a newborn terrifies me. So when my life was on the line, there was no hesitation. When it came down to me or my uterus, I chose me.
If I had waited, I would be dead.
However, as treatment comes to a close — after 5 months of surgery, chemotherapy, and radiation we are 25 days away from freedom! — I am now starting to mourn all of the things I’ve had to sacrifice, children included.
I will never know what it feels like to be pregnant or give birth, to breastfeed or stay up all night with my newborn. I will never see what a Max-Taryn baby would look like or pass on my DNA. This might sound silly but I have an Indigenous MtDNA haplogroup (B2B) and I think about my failure to keep it on this planet. After all my ancestors sacrificed to get me here, I will be the last of my B2B line (men, i.e. my brother, can’t pass it on). I had one job and I couldn’t complete it.
I understand adoption is an option — my mother was adopted and that’s always been something I am interested in. But adoption is also fraught with its own hardships — time and money come to mind.
Don’t get me wrong — I am happy to adopt. The idea of giving a child a loving home they may not have had otherwise fills me with joy. But the idea of never having biological children, of having the option ripped away from me to save my own life, has left me feeling sad. Like something that could have existed no longer does.
I imagine thousands of women — even outside of cancer — who learn they cannot conceive must feel similarly. Suddenly, I am not saying “no kids for me” instead it’s my body saying “you can no longer create a child.” There’s a difference.
I hear women speak of the “magic” of pregnancy or that having a child is a feeling that “can never be replicated” and it makes me feel like I’ve been left out of the secret club of womanhood. As I write this, my eyes well with tears. As a woman — despite my lack of body parts — there’s something deep down that tells me I’ve lost something sacred.
But Taryn, you say, you’ll be fine, you can still love a child, you’re still a woman, there’s still so much life to live!!! I know. I know all of these things.
So why write this? I suppose my thought was, for any woman or any cancer survivor who feels like they’ve lost too much I wanted to say you’re not alone. Your sacrifice was not in vain — it’s okay to put survival above all else — and it’s okay to be sad about it sometimes. I know I am.
And don’t even get me started on my menopausal vagina — that’s for another post, most likely titled “The desert of all deserts.” :)
***
For those who don’t know, I was diagnosed with Stage 3C Small Cell Neuroendocrine cancer in October 2019 at age 34. There are less than 200 cases per year. There is no research, funding, or clinical trials for this cancer. If you would like to learn more please visit https://necervix.com/facts/.
I also have a GoFundMe here: https://www.gofundme.com/f/help-taryn-beat-cancer. (No pressure, anything and everything is appreciated.)
What It’s Really Like to Have Cancer (And go through treatment)
Cancer sucks — but it’s also an incredibly interesting journey. So it’s no surprise that I often get asked “What’s it like to go through chemo? What does radiation feel like? What do you DO all day?” (which, please, ask away). In light of that, I thought I would highlight what a typical day is like when living with the Big-C and going through surgery, chemo and concurrent radiation. (Spoiler: I talk about poop a lot.)
7:30 AM: Wake up one hour before leaving for radiation to “prepare”. Preparation includes chugging coffee to “clear my bowels” and then chugging 30 ounces of water to fill my bladder. Pelvic radiation can’t happen without a full bladder and empty bowels. #TheMoreYouKnow
8:30 AM: Drive to the hospital. Sit in traffic. Cry for no reason. Navigate parking. Parking at the hospital is $13 (and I’m here everyday), followed by parking at chemo, which is $22.50. That’s $35.50 per day!!!! And they wonder why cancer patients are broke. I dream of M4A.
9:00 AM: Duck into the hospital as quickly as possible because I’m terrified of CoronaVirus (hello, immunocompromised). I take no elevators and run down two flights of stairs to Radiation Oncology. I touch nothing. No bannisters, no sign-in pens, no doorknobs. I arrive for radiation and I have to pee VERY badly.
9:10 AM: I’ve been scanned and told my bowels are too full. I am threatened with a enema the next day if I can’t “fix the problem.” I explain that chemo (and the anti-nausea meds, specifically Zofran) cause constipation so it’s difficult to poop on a schedule. *sigh* Enemas terrify me and now it’s all I can think about.
I get radiation, which is basically like sitting in a tanning bed (minus the heat) while Coldplay plays over loud speakers. It’s way better than chemo.
9:30 AM: Leave hospital to drive to a SECOND location to get infused with chemo drugs. Yay, more poison! (Oh and be exposed to more sick people.)
10:30 AM: Arrive 30 minutes early for chemo — I’m tired. I’m hungry. I’m nauseous.
11:20 AM: Chemo is busy today, I get called 20 minutes past my appointment and get put in Room 3, the worst room. Why the worst? Because Room 1 gets an ocean view and Room 3 stares at a beige and black office building. One time I got Room 1 and it was pretty cool. I’m not sure who controls room selection, but boy they love putting me in Room 3. :)
Vitals, weight, and height are all checked. My temp is 99 degrees. That’s strange. We don’t know why. Oh well.
I am asked if I’m eating because I’ve lost too much weight. (I’ve only lost about 15 pounds.) One doctor tells me they’ll make me drink protein shakes if I don’t gain weight. (It’s very important while having cancer to make your body do very specific things at all times that are really hard to control — but whatever.)
11:30 AM: Get more Zofran (great, more constipation). I am dizzy now. Here come the chemo drugs. My nurse shows up in her full hazmat suit, because you know she’s handling poison. My body is meant to just sit and take it.
Chemo rushes into my body via my port (a device in my chest). It feels like … nothing, except over time you start to feel queasy, tired and loopy.
I try walking to the bathroom with my “IV” attached. I feel high even though I’m not. It takes forever to pee and my urethra hurts. TMI?
I take a chemo nap as the drugs obliterate cancer cells. My husband plays on his laptop. #TheDream
1:30 PM: Short infusion day — after 2 hours I am done. Beats the 7 hours two days before. The nurse attaches a device to my arm that I’ll wear for 24 hours. The device — which costs me~$500 — will inject me with Neulasta so that my bone marrow can go crazy and replenish my white blood cells etc. It sucks, but I’m thankful it keeps my levels up. After the injection I feel the shittiest. Some people describe the feeling as “like being a 95-year-old lady”. All I know is I’d kill to make it to 95. I take Claritin to mitigate the side effects.
2 PM: Make it back to the AirBNB. So tired. So nauseous. Time to get high. I take a watermelon “edible” gummy so I can float away for five hours. The fact that weed is illegal anywhere infuriates me. WE NEED IT! LET PEOPLE BE HAPPY!
2 PM to 9 PM: A combination of eating, nausea, hydrating (but not too fast, you’ll get nauseous) and crying. I drink some SmoothMove tea, because ya know I DON’T WANT an enema at radiation. Watch “30 Rock”, hang with my cat, feel like shit. Bathe in epsom salts (helps with the nausea — did I mention I am nauseous?) while trying not to get the arm device wet. Cry some more. I’m so tired!
9:30 PM: Time to sleep. Praying to get through the night without peeing too much, getting a migraine, waking up short of breath or having my hands go numb. My husband reminds me one thousand times a day how strong I am and how much he loves me (d’awww he’s really the best). Oh, and he rubs my feet.
9:40 PM: Count my blessings because, honestly I am FUCKING BLESSED.
Despite all the shittiness, I go to bed thankful that I was able to take time off work (some people can’t), that my friends and family donated to my GoFundMe so we can afford to pay rent in LA while having to go to the hospital daily, that my husband has a job and fanbase that allow him to take time off to take care of me, that my mom is retired and also takes care of me, that I receive daily text messages, emails and DMs from people that keep my spirits high.
Cancer is a daily battle — and it’s a long one. I am five months into treatment and I am sick of being sick. I have 30 days left. I must power through. I could not do any of this without each and every person helping me. It takes an army. If you know anyone else with cancer reach out to them. Sometimes we feel isolated and alone and the battle feels too big. You never know when a loving text can pull someone through a shitty day. :)
7:30 AM: Time to do it all over again!
The End.
P.S. The tea worked! I did NOT have to get an enema :)
*****
For those who don’t know, I was diagnosed with Stage 3C Small Cell Neuroendocrine cancer in October 2019 at age 34. There are less than 200 cases per year. There is no research, funding or clinical trials for this cancer. If you would like to learn more please visit https://necervix.com/facts/.
I also have a GoFundMe here: https://www.gofundme.com/f/help-taryn-beat-cancer. (No pressure, anything and everything is appreciated.)
When the Odds Are Against You, Cancer Is Purgatory
Hello, I am writing to you from Purgatory. The odds of me getting out still sit around 7% to 10% (maybe as high as 30% if you count a tiny study from Japan). Once or twice per week I lay awake at night crying, wondering if I am going to die. I really don’t want to fucking die. I try to stay positive. But dark thoughts penetrate my brain, they dig into my consciousness like, well, a cancer.
“What if the treatment doesn’t work? It doesn’t work for most people.”
“What if it comes back and this is just a slow ride to death? It is for most people.”
I watched my dad die for eight years, please Universe, don’t let that be me.
But then, I feel guilty for allowing the negative thoughts to take up space in my world, to pierce my resolve and crack away at my resilience. So, I fight back, “You are not most people. You are Taryn. You can do this. Some people are cured.”
The fight gets harder with each passing day in Purgatory (especially with the no alcohol allowed policy). I am immunocompromised. I can’t go out into public, I can’t see anyone who has been on a plane, I can’t be around children, I wash my hands five thousand times per day. Headlines of Coronavirus in Riverside, California — 40 miles from me — terrify me. I am isolated from the world, except through social media. I am stuck in my house, waiting. Waiting for a future that I dream will rescue me.
I think about complaining to a manager — but who’s the manager in the store of life or death?
I want to think about my next moves, my life after cancer, but it’s frustrating and depressing. What if there are no next moves? What if there is no life after cancer? We’re back on the ferris wheel of negative thoughts spinning ‘round and round. Sometimes it’s hard to get off.
Most days I am positive, I am strong. I tell myself my cancer is gone (I truly believe this). I tell myself I will be stronger than biology. I will tackle chemo and radiation with the grit of a Gladiator — entering the arena each time knowing with every cell in my body that I will walk away alive. But here in Purgatory that’s all you can do is sit in a cage of cancer and believe you are stronger than those who perished before you. You must walk over their bodies as you climb to the mountaintop. You must believe that everything will be okay, because somehow, despite the numbers, you will persevere where others have failed. You must believe in yourself beyond any reasonable doubt.
It’s exhausting. I fill my days with reading, acupuncture, yoga, vegetables, rituals, music and dogs. And I am privileged. I am fighting cancer from a place a privilege and I know that. I am attempting to tip the scales in my favor with every breath, heartbeat, guided meditation and ounce of my being. But there’s always the little voice that asks, “What if none of that matters? What if it’s luck?”
Then, I hope I am lucky.
I hope I can return to life and live without looking over my shoulder.
I hope I can become a positive influence on the world.
I hope I can experience life in new light, one now filled with gratitude.
I hope I can give others hope.
I hope that my time in Purgatory will be temporary. A blip on the radar. That I will look back on my visit here as a blessing in disguise.
As someone, who gave me much hope, said “This is your realignment by fire.” I hope to walk through the flames a stronger person than I entered.
But for now, I wait.
***
For those who don’t know, I was diagnosed with Stage 3C Small Cell Neuroendocrine cancer in October 2019. There are less than 200 cases per year. There is no research, funding or clinical trials for this cancer. If you would like to learn more please visit https://necervix.com/facts/.
I also have a GoFundMe here: https://www.gofundme.com/f/help-taryn-beat-cancer.