Although the first few days after my diagnosis were the longest, most horrific time of my life, it’s hard to believe that merely one month has passed since we learned the news. It’s excellent how quickly they moved once they found out, and I think they might have moved even more quickly if we didn’t have the diversion with the oral surgeon referring us to Princess Margaret. In retrospect, it was a diversion–the Lakeridge staff is excellent and the treatment is the same. I don’t fault him for doing it because he is based out of Toronto and that’s where he would refer a Torontonian. Anyway, done is done.
I take a sleeping pill the night before chemo, but somehow I manage to hear Calliope crying in the middle of the night. Lying in bed, it feels like an eternity before anyone comes to get her, so I stand up and stagger out of the bedroom.
Yes, literally stagger–it’s the sleeping pill. I trip over my own feet and almost fall into the bed. Because I’m not thinking clearly, I pick her up when I get in there. Thankfully, Mom is right behind me and extracts her from my grip without anyone dropping a baby. I go back to bed and fall immediately back asleep.
I’ve been taking less and less Ativan, but I need one that morning to get me out of bed. The morning does not contain the high emotion of Friday, but I am pensive, nervous. As these things always go, we have a conflict: the babies are having their six-month shots in the afternoon. So we coordinate with my dad coming with me to start the chemo, then he’s going home to babysit Morrigan, while Grandma and Daddy take the babies in.
We get to the hospital, and we order Tim’s. I eat my breakfast sandwich at the table, and the line fills up fast. It’s funny the things we say over and over again, the mundane, routine things that make up our reality. “We got here just in time!” I note while I sip on my coffee. It’s hard for me to bite into bacon now because it requires tearing with my teeth, which is uncomfortable. I settle for sausage. When I’m done, I take my pre-chemo anti-nausea pill.
I’m the first appointment of the day, so there’s only one older couple in the small waiting room when we arrive outside the System Treatment Area. The pharmacy is closed, with a wood panel rolled over the door. The lights are dim, and it’s quiet, without all the staff bustling around during the day. My appointment is for 8:20, and I’m always punctual, so we sit down at 8:15 and wait.
An older gentleman comes from inside the chemo area and calls me. “My name is Jerry,” he says. He leads me through the empty room, beds prepped, curtains drawn back. He stops in front of the chair that will be mine for the day. “I’m a volunteer, and I’m here if you need anything.” He looked me in the eye. “I’m a survivor. This really works. You’re going to be ok.”
None of the staff has ever said that to me. It’s all right, though. I don’t mind. They know there are no guarantees, but they do have their own reassurances.
My nurse’s name is Katy, and she’s very nice as she prepares everything. I’m floored by how nice everyone is. I mean, you would think they would be, wouldn’t you? But you never know. And I’ve met some nasty nurses in my time. I get how you could end up hating your job, but it’s the worst kind of job to hate. You affect everyone you come in contact with, people who just need a little bit of kindness sometimes to feel better about whatever is going wrong. And, of course, that makes the patient nasty, and it’s a vicious cycle.
But, of course, most nurses I meet are awesome human beings. It’s just that every person so far I’ve met in conjunction with the cancer wards has been soft, soothing, and pleasant. It must take a lot out of them to always be “on,” but it makes a huge difference. One wrong look could mean I’m spinning off into paranoia about my diagnosis, when all it might have meant is that they didn’t like the chicken salad their significant other packed in their lunchbox.
The chair I’m to spend the day in is a recliner. It takes a bit to figure out how to work it–although it’s not that complicated; it’s just one of those things. Because I don’t have my portocatheter, Katy looks over my veins to decide on the best one for the day. She chooses one on the side of my right arm about two inches below my wrist bump. It pinches going in, and she apologizes.
The plan for the day is each medication on its own for 60-90 minutes and 60 minutes of observation to make sure I don’t have an adverse reaction.
Katy hooks up the first immunobooster, the pertuzumab / Perjeta. This is the most important one–at least, in my head it is, because it’s the most recent one to come into regular use. This is the one that has to work because it’s most cutting-edge. The fluid is clear and everything goes fine as she finishes getting me all setup.
About ten minutes after it starts going, I begin to feel aches in my shoulders and jaw. I wait, it gets a little worse, and then it stabilizes. It feels like when you’re getting the flu. The pharmacist told us this was normal, especially for afterward, because the “mab” in “pertuzumab” stands for “monoclonal anti-body.” That achy feeling you get when you’re getting the flu? Is your own antibodies rallying to kick the crap out of whatever you’ve got.
The More You Know. (DING DING DING)
I inform Katy of this development. She talks to the doctor on call. The doctor says this is normal. Everything proceeds according to plan.
Dad and I chat for a while. I’ve brought my laptop, but I spend most of the day playing Covet Fashion or posting on Facebook. I don’t know why, but I feel foggy and nervous, and I can’t bring myself to read or do anything productive. Of course, I’m doing something productive–I’m whooping cancer’s ass–but I still feel like I should be doing more.
Story of my life.
Once the pertuzumab is done, about half an hour into the observation period, the feeling of aches goes away. They move on to the trastuzumab / Herceptin. No reaction there. I post some more. I read some Facebook. Dad leaves and gets me lunch. The rocket surgeons at that Subway give him vegetable soup even though he orders tomato basil. (Yuck, vegetable soup.) I eat it anyway.
The day is getting long, but I’ve still got hours to go left. One of the social workers stops by to see how I’m doing. She spend about an hour talking with me, which is helpful. I’m more concerned about getting a counselor for Morrigan because she’s been having so many ups and down ever since, well, I got pregnant with the twins. And it’s not going to stop any time soon. Hopefully within a year! But we’ll have to see.
Anyway, the counselor and I talk. I really need to work on getting rid of guilt. “Guilt is when you’ve done something bad,” she says. “Shame is when you feel like you are bad.”
I don’t feel shame, but I do feel guilt, all the time. So I remind myself: “When the babies are crying at night, and my parents are taking care of them, I am not doing something bad. I’m doing what I should, which is sleeping to conserve my energy to fight cancer, so I can be there for them years and years to come.” Voila, no guilt! Well, maybe not quite that simple, but it does lessen.
Between each of my treatments, Katy gives me a bag of saline, so I start having to pee every 45 minutes. By the end of the day, that’s getting rather tiresome, since I have to unwind the IV, unplug it from the wall, peel off the two blankets I’m wearing–BRRRR, it’s cold in there–put foot part of the recliner down, and stagger across the floor a little light-headed. But I’m making it, and I remember to flush the toilet twice, even, since there’s a big sign reminding me. (It’s a precaution for the chemotherapy so others aren’t affected.)
After the social worker leaves, it’s time for the main event. Katy gives me my premeds. A combination of Benedryl, Tylenol, and something else anti-nausea, I believe. As it’s going in, I get so sleepy I can’t even lift my head, but I can’t actually fall asleep, either. I’m afraid I’ll be groggy like this the rest of the day, but once the meds are done and she actually starts the chemo, I’m back to regular fog instead of super-mega fog.
The chemo is a light brown bag of fluid. It reminds me of iced tea. I post another pic on Instragram. I feel like such a diva, making a big ordeal of my everyday events. But really, these are as far from everyday events as one can get. I guess it’s another type of guilt, but I’ve never liked calling attention to myself. I seem to always have something unusual about myself that people are interested in, so I’m sort of used to it, but I’m still an introvert and will be for life.
About five minutes after she starts the chemo, my arm starts burning. It turns into a feeling of nerve pain, like if I banged my funny bone and then that nerve in my wrist, and then they met in the middle. I’m getting quite uncomfortable, so I call Katy over.
“Oh, dear,” she says, “That’s probably normal, but let me check.” She looks at the IV and at my arm. “This is why we put the port in, actually. The chemo can irritate your veins. Let me see what I can do.”
She comes back with a latex hospital glove filled with warm water.
“Put this against the IV site and see if it helps.”
Really? I’m extremely dubious, but the pain is pretty bad. I do as she says… and within a couple minutes, the pain is gone. Wow, these nurses really know their stuff. Not only that, but the rubber gloves stays warm for the entire time I’m on the drip, which is about forty-five minutes. Who would have thought?
Throughout the time I’m there, people come in, sit at their own stations, and leave. By the end of the day, I’m the last one left. This is normal for the first time, and they warned me, but it’s also weird to come in when it’s empty and leave when it’s empty. Next week won’t be as long, although I might have to stay as late because they’re putting my port in and thus starting mid- to late morning.
We finish up with the bone strengthener, and I text my dad to tell him I’m about done. He comes in, and we finish up. As I’m leaving, I have to pee again. I’m glad to be done.
After, I feel pretty good. I’m tired, but not tired enough to sleep, so I take another sleeping pill that night. The treatment was not as bad as I feared–the biggest problem was the boredom. Maybe next week, I’ll get started working on Warring Angel. Maybe. We’ll have to see how I feel.
One down. ??? to go.