Calliope sleeps poorly the night before my big Friday appointment in the local hospital’s cancer center. Her bottom right tooth is out, and all her gums seem sensitive. She’s also scratching like mad, even though we’re slathering her with eczema cream after every nap and sometimes in between. We got some new gunk, which seemed to work right away, but now it’s like the other one: rapid improvement and then stalemate.
I stagger out of bed several times to comfort her. Kevin is exhausted and passes out. When I attempt to wake him up to ask if he’s given her medicine, he opens his eyes and looks at me like he’s not there. When I mention it in the morning, he doesn’t remember. His stress is through the roof, and I wish I could give him one of my pills to make things better. (I DON’T, THOUGH, GOSH.) I don’t wake my parents because I feel like I’m already up, so why wake them? Finally, after Tylenol at 2 a.m., Calliope quiets down and sleeps.
I awake in the morning to anxiety. I lie in bed, not wanting to move. Perhaps it’s a primal fear kind of thing, like my body thinks predator eyes are on me. I make a break for my bookbag downstairs next to the front door, where I keep everything I bring to the hospital, dashing past Mom and Dad holding babies. I stick an Ativan under my tongue, race back up the stairs, and jump into bed.
Nothing has gotten me, so that’s good.
The Ativan calms me enough that I tentatively stick a toe out of bed. I go about my morning routine, washing my face, brushing my teeth, stressing over the missing one and the tumor, getting dressed. I probably go pee in there, too, because what’s a story about my boring daily routine without including toilet habits?
When I go downstairs, Kevin hugs me, a long hug. Then Dad hugs me. It’s an even longer hug. I appreciate these hugs, but my hyperactive brain wonder what, why, how–should I be stressing more than I already am? Mom jumps in, and then I kiss Morrigan goodbye.
The babies are on the playmat, and I kneel next to them. “I love you guys.” I tickle their tummies and toes, and they both smile at me. Calliope manages a cooing giggle. When I get up to leave, she starts crying. I swallow my sadness and walk away.
Right now, I have to take care of me.
The cancer center is full of old people. I try not to look around, but it’s so damn unfair. Every time I come see the doctor, I’ll do bloodwork first. I end up crying into my Tim Horton’s coffee, I take an Ativan, and Kevin grabs my hand and squeezes. I feel like everyone is staring at me. When the lab technician calls me in, I recognize him from when I was in the hospital giving birth six months ago. An old man is sitting in one seat, and another old man is sitting in another seat. It’s not like they deserve this, not at all, but it’s so damn unfair.
We wait for a while. A nurse comes and gets us. She weighs and measures me. We go into the room. She starts asking questions, and many of them are repeats from the Princess Margaret visit. She apologizes in advance; I don’t mind. After all, that’s what I here for. It’s all very routine, and she leaves after about fifteen minutes of questions, telling us Dr. Freedman will see us shortly.
A young woman walks in.
Is this an intern? Damn unruly brain, thinking things it shouldn’t. I’m a modern feminist. I should know better. She’s wearing a beret and black-rimmed glasses, and she seems about my age. Later, Kevin comments that she looks like one of those people on the house buying shows who are all, “I just do my art, you know, sculpting potted plants? Also, we have a three million dollar budget,” and you’re like, “Whaaaaaaat?”
I know this is my oncologist because the nurse said she’s coming in next, plus she has this soothing vibe about her like it’s not her first rodeo. This is a woman who gets her profession mainsplained to her all. The. Time. I decide this is a good thing since it means she’s going to be sharp. Fuck the patriarchy.
“I’m Dr. Freedman,” she says, shaking my hand and then Kevin’s. She sits on the stool. “Tell me what you know about your diagnosis.”
I go through everything, stumbling and stammering. I try not to leave anything out because I don’t want to hear it again, but I am hearing it again, from my own mouth. I manage not to cry or have a panic attack, and then I warn her that I’m not doing so well. “I hope you have only good news this point onward.”
“Yes, all that’s correct.” She doesn’t add much more and then says, “All right, I’m going to do an exam.” She gets me a hospital gown and instructs me to open it in the front. She actually leaves–SURPRISE–and lets me undress myself.
When she comes back, she feels all around my torso, shoulder, and breasts. She says she finds the two lumps in the left side, and at first I think she must have super powers. Then I realize two pink marks from the biopsy are still there, so duh. It’s easier to find them when they’re marked.
She says, “Your teeth that are inside the tumor might fall out once the chemo starts working.” The jaw tumor has eaten away at the bone, so nothing will be holding them in.
I have two molars in the back left side that weren’t (during my CT scan two months ago) affected by the tumor. The premolar after that is gone from the biopsy. Then the tumor stretches one, two, three, four, five teeth at least, over to my right front one.
At one point, the periodontist looked me in the eye and said in a firm and commanding voice, “Don’t worry about your teeth. Teeth can be replaced.” It’s something I’ve clung to throughout this. One less thing for me to have anxiety over.
“OK, I understand.”
After I get dressed, she sits down and starts writing on a white piece of computer paper. When she’s finished, it’s entirely full.
I have Her2 positive breast cancer with 10-20% Estrogen Receptor markers. That means I’ll be going on the regime that Dr. Warr prescribed (chemotherapy plus two immunotherapies). I will also get a bone strengthener because the cancer is leaching calcium out of my bones, and an estrogen blocker at some point. Then, as Dr. Warr said, I’ll be on maintenance every three weeks for possibly the rest of my life.
She says, “The bad news is that Her2 is an aggressive form of cancer. The good news is that this treatment works really well, and Her2 the most studied form right now. Tons of new treatments are in testing.”
Trastuzumab (Herceptin) has been around for about 15-20 years. “There’s a Lifetime movie starring Harry Connick, Jr., about a doctor who created this treatment. In it, there’s a woman who had resigned herself to dying because there were no treatments available then, and he convinced her to be in his trial. The documentary followed her for ten years, and she was still alive and cancer-free at that point.”
Pertuzumab (Perjeta) is even better. When coupled with the chemotherapy and trastuzumab, it wipes all the cancer out. “First it’s everywhere, then it’s nowhere,” she says. Later, we get further training on the medications I’m on, and the pharmacist tells us that it’s like a lock and key. Each immunobooster fits into the cells and unlocks them to rid my body of them. If we use both, it’s most likely to get everything.
What confuses me the most is that every October is Run For the Cure. If we have most of the cure, why doesn’t anyone say that? I didn’t need to think I was going to die. I get that it’s not 100%, but it’s getting pretty close. I’m too scared to look up what it is, but I do know that especially when using this as a first treatment (since there hasn’t been failed treatments prior, i.e. too aggressive and pushed past the chemo to metastasize), this is highly effective.
“I want to start you right away,” Dr. Freedman says. “You’ll come in for chemotherapy on Monday. We usually do a tour of this wing with a group every Tuesday, but you’re going to have a private tour today. Then a pharmacist will train on your medications. Finally, I’m sending you for a heart ECHO because pertuzumab was shown to sometimes cause weakening of the heart muscle in early trials before we got the dosage right. We need a baseline.”
She lays out the plan: chemotherapy every week and the immunoboosters every three weeks on Mondays. Fridays I’ll have a checkup with her to make sure all my levels (calcium, white blood cell, platelets, etc.) are all fine. We’ll do three rounds (nine weeks) and then reevaluate. In the meantime, she’s sending me for an MRI of my brain and spine to determine if I need radiation after the nine weeks.
“Do you have any questions?”
I press my lips together, trying to come up with a coherent way of asking my question and not knowing how to put voice to my fears. “I, um, I have a question about the pregnancy. I, like, understand science and stuff,” Oh, that sounds brilliant, Samantha, “so I don’t think this is– Anyway– If the cancer metastasized when I was carrying the babies, could they have gotten it?”
She shakes her head. “The placenta is an organ we don’t fully understand, but it has amazing properties. There are only a small number of cancers that can be transmitted to babies, and breast cancer isn’t one of them.”
“OK. Thank you.” Tears are brimming in my eyes. “One more thing. I want to apply for compassionate use for the treatments from the pharmaceutical company.”
“No, you don’t need to do that,” she says. “We’re in Canada. Everything is covered.”
My heart is in my throat. I was sure the injections were going to be thousands of dollars. “Even the ones I have to take for the rest of my life?”
“Yes,” she says.
I’m still worried about money–when am I not worried about money? it’s like a hobby for me–but at least that particular cost is wiped off my arms-length list of “Things We Will Need To Pay For and Where Will the Funds Come From Exactly?”
Dr. Freedman walks out. Kevin and I breathe a sigh of relief. I wipe at my eyes.
“See,” says Herman, “I told you that you were going to be all right.”
I give him a look. “Well, excuse me for being worried.”
We wait for a while. The blood work lab technician calls my name around the corner, and I almost don’t hear it because we’re still in the room. I’m confused because they didn’t say anything about more needles. I ask her what it’s for, and I tell her I already had two vials of blood drawn.
She throws up her hands. “I don’t order it. I just do it.”
I guess they can’t all speak in soothing, gentle voices.
Kevin marches off to find someone who knows something and isn’t snippy with cancer patients. I run into a woman outside my door, who says she’s arrived to give us a tour. We sort out the blood draw. It’s for my portocatheter, although why, I don’t know, but whatever. Our tour guide says, “I’ll have you do it afterwards.”
She shows me around. It’s not a complicated facility, but it seems big. There are three hallways with exam rooms, the blood work area we’re already familiar with that has perhaps thirty seats in it, and a waiting area with about a dozen seats at the other end of the hall for the chemotherapy room. The pharmacy is right next to it, so if I need any of my pills refilled, it’s a quick jaunt and not halfway across the hospital or something. When I arrive in the morning, I scan a white card with my information, which tells them I’m here for my appointment.
The tour guide opens the door to the chemotherapy room. Everyone inside is old. I don’t see one young face. A woman is knitting, a man is sleeping, and another is staring off into space. The butterflies act like they’re going to have a mosh pit, but I get an iron grip on them.
There are sets of four beds around the room, with a wall dividing them, along with are bathrooms. It looks like a total of eight sets, which makes 32 chemotherapy stations.
Wow. That’s… a lot. It’s weird how many people can theoretically be going through chemo at the same time. Of course it’s serving most of the Durham region, which is hundreds of thousands of people, but still.
Our tour guide hands us off to a pharmacist named Alice. We have the heart ECHO scheduled for 2 p.m., and it’s not even noon yet. What are we going to do for two hours?
The answer is, apparently, earn a degree in pharmacology.
Alice is hilarious. “OK, so make sure that you follow the directions laid out for your prescriptions. I mean, I know it’s not fun because I totally do not ever take all of my antibiotics when they’re prescribed. I’m all, ‘Oh, I’m feeling better! I can stop taking them!’ But don’t do that. Do as I say, not as I do! I mean, not as I just said, but as the paper says.”
I have an anti-nausea pill to take an hour before chemo starts. I have another one that I can take every four hours, although there are high, medium, and low nausea chemos, and I’m on a low nausea one. She talks about the bone strengthener that I’ll be getting, the cocktail of premeds I get before chemo, and how NSAIDs (I’m on ibuprofen) can cause microtears in the stomach lining, so I need to be careful with it. I have to stop taking my probiotic, which makes me nervous because it seems to be staving off the food intolerance that was cured when Morrigan was born.
But it’s a small price to pay for getting rid of cancer.
It’s already been a long day. We run down to the food court and gobble down some Subway after waiting in line for almost fifteen minutes with only two people in front of us. The rocket surgeons working there don’t close the lid on my soup very well, so it sloshes over the one napkin they included. I have trouble chewing the chips, as always, but it’s better than trying to bite into a sandwich. Sometimes it hurts, but more often than not, it’s just uncomfortable.
We rush down to the basement for the ECHO scan. It’s an ultrasound of my heart, and the technician smooshes gel all around my chest and under my boob to get picture after picture. She’s nice, but she tells me a story about an aunt who got breast cancer, didn’t tell anyone, didn’t get treatment, and died. After three-fourths of the way through the story, she says, “Oh, dear, I’m depressing you now.”
It upset me as she talked, but I continue to think about it after and realize I am being courageous. Getting up out of bed, shaving my head, and showing up for chemotherapy don’t seem like big things. They’re just small steps, one foot in front of the other, but I am being brave. Asking friends for food–sharing my Pink Christmas–talking about blog–telling people about my GoFundMe takes courage. I should give myself credit for this. In some ways, it would be easy to curl up in a ball, stare at the wall, and not face it.
But I can do it. I can do it. I can do it.
Now I just sound like Stuart Smalley–or was that a Mad TV sketch?–but who the fuck cares?