Life After Diagnosis: Jeana’s Narrative
“There she sat on the bed with two of her best friends when the phone rang, when life as she knew it ended – when finding what to wear and where to eat and whether to curl her hair or wear it straight wouldn’t matter anymore because there would be so much more to worry about.
After the lump was found, and the doctor diagnosed fibroadenoma with such minimal concern, it was too easy for her to shrug off. Yes, there was family history of cancer, but she didn’t think it would be her. Even after years of joking with friends and making comments like “Oh, I guess I have cancer,” she never truly believed it was going to be her reality.
Comforted by the words of her doctor who reassured her there was nothing to worry about, and really feeling no pain from the ‘lump,’ it was simple to move on, to follow the directions of the doctor – limit caffeine intake, no chocolate, pay attention to the size/feeling of the lump before/during/after your menstrual cycle. “Everything else looks normal, I’ll see you back in a year for your next exam.”
Only when she saw the doctor the next time, it wasn’t for her yearly exam. It was because the lump had grown larger, and especially hard to ignore considering the small size of her natural breasts. It had begun throbbing, sending shooting pains through the breast. Constant. Shooting. Pains. Pains that would cause her to curl up and cry, to hold a heating pad over the breast in hopes of some sort of relief. Conversations with medical professionals who assured her it wasn’t cancer because “cancer doesn’t hurt,” and that the fact that the “lump” was able to be moved and wasn’t stationary was a good sign because, well, apparently cancer doesn’t move either. “I’m going to order an ultrasound, just for peace of mind as I’m pretty confident nothing is going on here but given the pain you’re in and the family history, it’s probably best.”
Lying there as the radiologist is probing the breast area for the ultrasound, seeing the very visible tumor on the screen, feeling the cold, unfamiliar hands, prodding and poking around, hearing the click sound of the machine as they secure the images to be sent to follow-up appointments. “I’m fairly certain this is benign, I’m in agreeance with your doctor that it’s likely fibroadenoma, we have two options here. We can keep an eye on it for the next six months and see if it grows/changes, whether the pain increases or decreases, or we can go ahead and biopsy it to be extra safe.” She wants to go through with the biopsy she says, she doesn’t want to wonder for six (more) months what the lump growing inside of her breast is.
She laid on her side for the biopsy as her breasts were too small to get what was needed if she were to lay flat on her back. The burning sensation of the local anesthesia. The pinching of the needle. The click of the needle as it took the sample for the biopsy. The yellow iodine staining her skin. The fear. The panic. The loneliness.
The height of COVID. Masks everywhere, gloves everywhere, more panic everywhere. No visitors allowed. No guests allowed. “You must come at the time of your appointment and wait in your car; we will call you when we’re ready for you to come in.” No waiting rooms. No magazines. No TV with the news on to pass the time and drown out the sound of worry inside her brain. No mom allowed to come to listen to what the doctors had to say about her youngest daughter and the tumor growing inside of her. Just her. And another doctor to reassure her she didn’t have cancer. “We’re going to send the biopsy to the lab and have it checked out. I am confident that this is going to be benign. While I know it’s easier said than done, try not to worry, everything is going to be okay. Give us 5-7 days and we’ll be in touch with the results.”
It didn’t take five to seven days to be in touch with the results. It took three. Three days for a lab to examine the biopsy. Three days to look closely under the microscope and see the cells. The cancer cells. The very cells that were going to change life as she knew it.
May 15, a phone call. A “hello, how are you?” Quickly followed by a “are you alone? Are you sitting down?” A doctor, the same doctor, to tell her “I’m sorry but the results came back from the lab, the tumor is malignant. You have invasive ductal carcinoma, it’s breast cancer.” She threw the phone to her best friend sitting next to her, unable to comprehend the words that were coming from the doctor’s mouth. Unable to understand what exactly was happening and why her and is this real?
A list of doctors. A list of appointments. A starting line to a journey that was going to last much longer than she initially anticipated. Genetic testing, do you have the BRCA gene? Is this a genetic predisposition and you were bound to end up here eventually without evening knowing it? Fertility doctor, “do you want to have children? It’s likely that the chemo will make you incapable of conceiving. Do you want to come in for an exam so we can see how many eggs you have and if you’re a good candidate for egg retrieval and freezing the eggs until you’re ready to create an embryo?” “Congrats, you’re a great candidate we found 12 eggs. You have to give yourself this shot every day and then we’ll pick a specific day for retrieval. No, insurance doesn’t cover this, I’m sorry. Yes, you’ll have to pay a monthly storage fee for your eggs until you’re ready, if ever, to try to become pregnant. Are you sure you don’t want to go forward with fertility treatment? After all, there is no guarantee that you will ever have a period again or be capable of conceiving naturally.”
“Before your hair falls out you should make an appointment to go try wigs on to see what you’re most comfortable with. Definitely buy a wig. You’re young and losing your hair is very much going to come as a shock to you.”
An MRI to confirm that there was no spread to the lymph nodes, followed by a physical exam from the breast surgeon immediately concerned about spread to the lymph nodes. Another biopsy, on the spot. “No question, this needs to be biopsied right away and I am fairly confident that the biopsy is going to confirm cancer.” Another confirmation, more cancer. Hormone receptor positive. Estrogen positive. Progesterone positive. This is a unique diagnosis. HER2- in the breast, HER2+ in the lymph nodes. “We don’t see many cases like this. Your oncologist is going to need to present this to the tumor board so we can see the best way to treat this.”
Eight rounds of chemo, the first four are going to be harsh. “You’re going to be sick and your hair will likely start falling out before round two.” Countdown from eight. “We’re sorry, we actually need you to have 16 rounds of chemo. The last 12 will be much less harsh than the first four. A steroid to make your heart race.” A shot to keep your white blood cell count up. A compromised immune system during a global pandemic. An Ativan to lessen your anxiety. Benadryl to counteract any reaction you may have. Zofran to help your nausea. Marinol to increase your appetite. Red poison in your vein. A bruise to last at least three weeks. GRL. PWR. Sick, so sick. Ginger ale. Apple sauce. A hot bath. Drink. More. Water. “You’ll need to have your port placed before your second round of chemo; it will be so much easier than finding a vein for IV chemo when they can access your port.”
Another waiting room, another procedure, alone. Another surgeon who says he performs this procedure so many times a year, it’s going to be fine, you’re going to do great. “I do have to warn you, though, the catheter is going to go straight to the main vein that is behind your heart. This is dangerous and can present a medical emergency, it doesn’t help because you’re so. Very. Thin. It’s going to be a little more difficult to manage the placement and it’s going to stick out, a lot, since you have no fat to cover it.” A shot to calm the nerves. A bright light. A metal table. A five, four, three, two… and a recovery room. Gauze and tape to cover it all. A needle already placed into the port, ready for round two.
Days before a 31st birthday, strands of hair coming out more than ever. Not the typical brushing, coming out in clumps. Avoid washing the hair to avoid the clump of hair blocking the drain. Comb through. Get the loose hair out. “Your scalp hurts? That’s normal. Plan to shave your head before the scalp pain gets too uncomfortable. It’s better to shave it before it all falls out than to watch it all fall out.” A last-ditch effort to style her hair one last time. A clamp of the flat iron, a section of hair completely detached from the scalp. It’s time. There is no time left. A facetime call with her best friend and sister, another best friend watching, and another best friend with the clippers in hand. All the remaining hair falling to the floor. Closed eyes. She had no idea what she was going to look like without her hair. After all, as a woman, hair is just a part of your identity. It’s who you are, or so it seems. It reflects your style, and often, alludes to your personality. What is she like without it? What is life like without haircut appointments and Pinterest pictures with the perfect balayage and lighter for the summer and darker for the winter. Who is she, without her hair? Piles on the floor, lying on a trash bag to make for easy clean up.
Open eyes. Hey, she doesn’t look half bad with a shaved head. “Cancer, but make it fashion” she says. Five-hundred Facebook likes to confirm she doesn’t look too bad. The bald spots, the patches, the remaining hair falling out day by day. The tiny strands of hair left on her palm after shampooing, the remains stuck to a lint roller rolled over her scalp in an effort to get it all out. A pale, bald, head. A wig that feels so foreign. So dark. So full. So EXPENSIVE. So. Ugly. She doesn’t feel like herself when she puts the wig on, it feels so heavy and unnatural looking. She doesn’t see herself when she looks in the mirror anymore. She sees cancer. But hey, at least she still has her eyelashes and eyebrows. Something to celebrate, she guesses.
Woah, we’re halfway there. Eight down, Eight to go. Last. Freakin’. Chemo. A celebration – a cake, the most perfect cake, F*** CANCER. Because, well, F*** CANCER. All the family and friends cheering, the nurses singing, the bell ringing. A deep breath. It’s over. 6 weeks to let your body rest and recover from chemo and a chance for your immune system to build up before surgery.
One last scan to see how your body reacted to the chemo. No. Measurable. Masses. Great news. “Maybe you won’t even need radiation because you had such a great response to the chemo. We’re hoping to see a complete response post-surgery. We’re hoping we don’t find anything at all!”
Hair gone, eyebrows gone, eyelashes gone. All body hair gone. A strange feeling, an unfamiliar face looking back at her in the mirror. An unfamiliar body feeling more like the shell holding her spirit rather than the body that belongs to her. A feeling of betrayal – from God, from her body, from the universe. A misunderstanding. A pity-party. A longing for something different. A niece and nephew who don’t understand why she’s bald, and another nephew who she hopes to make it through cancer for just to show him that not everyone dies. Two small twins who don’t understand why she doesn’t look like the Jeana they’ve known their whole life. A beanie, every day. A little boy who asks her why she doesn’t have any hair since she’s a girl. An after-visit summary that reads her weigh-in of 104 pounds because chemo has completely stolen her appetite. Pale skin because she wasn’t allowed to be in the sun all summer long and her body no longer reacts to the spray tan she typically has.
Double mastectomy with lymph node removal, cancer in one breast but remove the other so there’s no chance to one day develop cancer in the that side. An appointment in between holidays to avoid missing more of life as she knew it. A negative COVID test and a 14-day quarantine to prepare. A 5 AM alarm, a missed call from a surgeon, a text to confirm he is cancelling the appointment. A rushed phone call to her mom to tell her to turn around. Disappointment. Anger. Frustration. A rescheduled appointment, a new COVID test, another quarantine, surgery day. “Your mom can’t wait in the waiting room for you, she needs to leave and we’ll call her to let her know all went well.” Another hospital gown. Another IV. Another shot for the nerves. Another metal table. Seven hours. Wake up, it’s over. “You did great!” Too much pain. Shots of Dilaudid, this will help. Recovery room, it’s time to go home. Bandages, tight, not knowing what she looked like underneath of them. Drains attached to both sides filling up with a bloody liquid, drained every four hours. “Write down the output. Bring your records with you to your follow up appointment. This is how it’s done. See you in two weeks.”
She had never been too worried about her breasts pre-surgery, but the thought of not having them anymore wasn’t easy, either. What were they going to look like? How strange was it going to be to see horizontal scars across the middle from her surgery incisions rather than seeing nipples, like she has had her entire life? This wasn’t the boob job she had once anticipated. This isn’t what she meant when she said she wanted them done. This wasn’t a “free” chance to get the size tits she always wanted. She would’ve rather done without; she would’ve preferred to stay flat chested for her whole life if she could’ve avoided this. A recliner to sleep, friends and family taking turns taking care of her, a week of rest to heal. An inability to get comfortable in any position. A stomach sleeper unable to sleep on her stomach. A life, disrupted.
A phone call from the breast center, clear margins during surgery! “This is the best possible outcome, really great news. Ultimately, it’s up to your oncologist whether you will need radiation and what the next steps in your treatment are, but we feel really great about the results from surgery.” A mental celebration. Hopes to avoid the burning of radiation. Hopes to being one step closer to the end of this chapter of life.
A visit every week to the plastic surgeon. A needle going into each breast, injecting more saline to fill the tissue expanders. Stretch the skin, make room for the implant. Tight skin, so much pain. “We can keep adding saline until it’s the size you want.” “We have to hurry and expand you, so you’ll be ready for radiation if that’s needed.”
A visit to the oncologist. A look of confusion when she hears she was misinformed by the doctor. “We’re not sure why the tumor wasn’t visible in your pre-surgery scans. The tumor was still there, it was 1.9 cm during the time of surgery which means you did not have the complete response to chemo that we had hoped for. You’re definitely going to be recommended to radiation oncology and ultimately it will be their say whether you’re a good candidate for radiation or not.” Oh, a good candidate for radiation, just what she had always hoped for.
“Continue with Herceptin and Perjeta for the next eight months.” “Actually, I’m sorry, change of plans. I brought your diagnosis and results from chemo back to the tumor board because I just haven’t dealt with many cases like this and would like input from my colleagues.” Another change of plans. We’re going to put you back on chemo because I’m not confident that there’s not remaining cancer cells in your body and I want to be proactive. We’ll be switching you to Kadcyla. It’s not as harsh, your hair won’t fall out. We anticipate you reacting to it just fine. Today we’ll do your last Herceptin/Perjeta infusion since it’s too late to put in orders for Kadcyla. While you’re getting your infusion, you’ll take the elevator down to radiation to meet with radiation oncology.”
“I know you hoped for no radiation but unfortunately, I am recommending radiation due to your response from chemo and the fact that the cancer was already present in the lymph nodes. I think it will be the safest bet to damage any remaining cells so you never have to do this again.” A CT scan. A panic. “Practice holding your breath for 30 seconds. If you have to breathe out, please let us know beforehand.” Thirty days in a row. Monday. Tuesday. Wednesday. Thursday. Friday. Six permanent tattoos, a dot in each position to line you up with the beams coming the walls so we know radiation is being delivered exactly where it’s supposed to. “”Hold your breath. And breathe.” A warm towel every other day over the radiated breast to strengthen the dose. Red skin. Red, red skin. Aquaphor, lotion, Aquaphor, lotion. Pain. Discomfort. “Take more Gabapentin.” Thirty days, done. Another bell. Another hurdle jumped. A little bit closer to the end.
The daily trips to radiation are over. The visits to the chemo center every three weeks are soon coming to an end. The hair is growing back. “I love your haircut! You seriously rock that short hair better than anyone!” Compliments from strangers who might not realize the hair is a result of losing it all from cancer and it growing back more gracefully than anyone anticipated. Compliments from friends who say she should be happy she looks so good with short hair; they could never do it like she’s doing it. “You look just like your brother,” they say. She loves her brother, but she doesn’t want to look like him, she wants to look like herself. Eyebrows are coming back, first wax to get rid of the unibrow she wished didn’t return. A little bit of brow tint to make them seem like the fuller brows that once were in their place. Short, stubby eyelashes. A little bit of serum to help them grow, a reaction that says she shouldn’t use it anymore. Too sensitive. Rock hard tissue expanders, one up, one down, one moving, one stuck in its place from the skin tightening due to radiation. Two horizontal scars, healing, waiting to be sliced back open to exchange for implants. Discolored skin from healed radiation burns. Permanent, they say. She hopes it’s not. Her pre-cancer weight is back that she lost during chemo. Even though her boyfriend makes jokes about her being thick and how great she looks, she doesn’t see that when she looks in the mirror. She sees uneven breasts. She sees imperfections. She sees flaws. She sees nothing that resembles the Jeana that once was.
She misses the Jeana she once was, and she’s confused about where she is right now. It’s a strange place to be, having focused solely on beating cancer for a year straight and then coming down the roller coaster as treatment comes to an end. To be considered “no evidence of disease” yet still be sitting in an infusion center with more poison flowing through her veins. To take a pill every night with the idea of having to take it every night for the next ten years. To wondering if she’ll ever have a period again but knowing that if she does, her oncologist will immediately order Lupron shots to force her back into menopause. She is in the body of a 31-year-old, though it doesn’t feel that way. She’s in menopause, she’s waking up in the middle of the night sweating, hot flashes that make her temperature rise almost instantaneously and then go away almost as quickly. She’s relating more to her 61-year-old mother’s problems than she is to her friends. Most of her friends are married or getting married, yet she’s only been focused on getting better and that’s not a part of her story right now. She hears friends talk about infertility and planning to get pregnant and she knows she’ll never have much to add to that conversation. She never had plans to have kids, but it’s a different feeling when the option was taken from her. When she knows she’ll never know what it feels like to create a life inside of her, to hear a heartbeat for the first time. She’ll never get to plan her gender reveal or baby shower or exciting announcement to share the news with everyone. There’s grief associated with a pregnancy she never even knew she might want until she considered never being able to have it.
She feels left behind in life, in a way that makes it hard to not feel bad for herself. Everyone’s lives are progressing and she’s so happy for them, but she wishes she was celebrating something greater than beating cancer. Her body aches and her legs are in constant pain and the fatigue is catching up to her with a vengeance. She’s exhausted, and she doesn’t do well emotionally when she’s exhausted physically. She’s frustrated. She wants to give up. She sometimes wishes that the cancer actually killed her, but she feels guilty because she’s a survivor and many people who died of cancer wished they had the opportunity to make it to survivorship. She figures no one will understand that feeling, some may think she’s selfish because she isn’t celebrating life every single day. Maybe there’s an expectation that she should just seize the day because she’s been given this second chance at life, but she’s too tired to do so. Her hopes don’t quite consist of conquering the world, more so conquering the feelings inside of her that don’t make too much sense. The in-between is a weird place to be. She feels like because the treatment is over and the hair is coming back and life is going on that everyone expects her to bounce back to pre-cancer Jeana, and maybe she expects to bounce back to pre-cancer Jeana too. But pre-cancer Jeana is gone and accepting post-cancer Jeana is harder than she imagined it to be.” — Jeana Osborne