A 30-year old mother-of-two's battle with metastatic (stage 4) Her2+ breast cancer. "One equal temper of heroic hearts / Made weak by time and fate, but strong in will / To strive, to seek, to find, and not to yield." - Alfred, Lord Tennyson
Tuesday, March 24, 2015
Round 4: The infusion facility.
I am generally the first one there.
Sometimes, I arrive before the reception staff have had time to boot up their computers. The wait can be a bit long, since the nurses are still en route to work and the infusion facility is completely void of any human activity. So I sip on iced tea and rub my port with numbing cream while I wait. To my left, my husband works remotely on his laptop, while to my right, my older sister pages through expired magazines that one only finds in doctor's offices.
I am finally summoned to the infusion facility, and they draw blood from my port. The numbing cream luckily helps to reduce any painful side effects of being stabbed with a needle. But, I mean, a stabbing is still a stabbing. Even though I am given advanced warning, the action startles me every time. The necessary blood is extracted but the needle stays in the port, attached to a tube that is taped to my skin. I should be used to it all by now. But, I'm not. I don't think I will ever be used to this silicone port in my chest.
After moving my stuff - laptop, snacks, etc. - to my private room, I then wait some more, this time for the requisite meeting with my oncologist. Before I see him, I'm weighed and cuffed and there is mention that my heart rate is high. It always is. Then my oncologist reviews the results of the blood draws and, thanks to the steroids I remembered to take twice the day before and once again at breakfast that morning, it is revealed that my white count, like my heart rate, is also high. Though, unlike my heart rate, my high white blood count is considered a good thing.
We go over any questions and schedule follow-up visits, and then I am sent to my room within the infusion facility to begin my treatment. I sit in a cushioned, heated chair covered with blankets, wearing a colorful scarf atop my head, a face full of makeup, and fuzzy socks on my feet. As I am given my premeds (including some heavy-duty antinausea meds) and the immunotherapy drugs, I pass the time by binge-watching Friends on my laptop via Netflix - with each episode, I chuckle at the outdated humor and the absurdity of plot devices, but also at the memories of watching these very episodes first on "live" TV and then again through a DVD marathon.
My, these times they are a-changin.
When the afternoon approaches and the chemo is due to make its entrance, I drink electrolytes and snack on pretzels as I wait for my lunch (Chinese, of course) to arrive. All in all, the entire process from start to finish is between five to six hours. But, I don't mind so much anymore. I am flanked by two of the most important people in my life: my husband on my left and my older sister on my right. I am relaxed and comfortable and maybe a little drowsy.
Until I have to go to the bathroom. Then, I am reminded that I am attached to IV tubes through a silicon port that was surgically placed in my body. And that these very tubes chain me to the long metal rod on wheels that hold the poisons and chemicals pumping greedily into my body. When I stand, I must depend on someone to help push the heavy contraption, which beeps incessantly, to the bathroom with me. This means I can never go to the bathroom alone. It is an unavoidable feeling of helplessness and degradation. But when nature calls, I guess one must answer it no matter how difficult the situation. So I put down my food and pause my laptop. Opening the door, I witness a stark contrast to the comfort of my room. Whereas inside there are loved ones and comedy TV and Chinese food, out here it is silent and still as a graveyard.
There are two private rooms on either end of the infusion facility: I occupy one, but the other seems like it is always empty. Instead, the room is crowded with patients who are much, much older than I could ever dream to be, each in the communal space separated only by a curtain. They sit in cushioned chairs like mine, but very few use any of the blankets. No one eats, even though it's lunch time. The women being treated are usually alone, wearing scarves or wigs on their heads, and the men are usually accompanied by a woman, whom I can only assume are their wives, knitting quietly beside them. Some of my fellow patients sleep, some read paperback books.
I acknowledge them all as I walk by them on my way to the bathroom. The ones who are asleep ignore me completely, and the ones who are awake stare at me but many do not reciprocate either. They just want to be left alone, it seems, which is fine and totally understandable. I must look so strange to them, this rosy-cheeked girl with a smile on her face and a skip in her step. But, like everyone else in the room, I too am playing a game of chess with Death. Some of us will win, and some of us won't be so fortunate.
Only time will tell.
I pass the nurses at their station, cheerfully greeting each by name, and they return my sentiment in kind. Always smiling, always offering me sweets and snacks, always inquiring after my health, always glad to see my sunshiney disposition. But I remember how it was when I first met them during my tour of the facility. The shock was palpable. Their smiles, which never reached their eyes, were strained and uneasy. They didn't know where to look. They asked me to repeat my date of birth because they couldn't process that one of their patients was born in December 1984. One nurse commented, "You are the youngest person I have ever seen walk through this door." And I believe her.
As in the infusion facility, the waiting room of the oncology office is also full of people much older than I am. Here, they regard me unabashedly, and I let them. Because it's not just blatant stares and looks of pity. No, I also see something else: fear. They look at my youth and suddenly think of younger sisters, nieces, daughters, granddaughters. Because, to them, I am living proof that cancer is merciless. But, hopefully - as a rosy-cheeked girl with a smile on my face and a skip in my step, as I successfully complete each round of chemo and eagerly await the end of this journey - I can also prove that cancer is fallible.
And it will rue the day it ever thought it could destroy me.
Wednesday, March 11, 2015
Finite disappointment, infinite hope.
Well. It had to happen at some point.
I became too comfortable with my current lifestyle and assumed that my situation would stay the same throughout the rest of my treatments. And we all know what they say about people who "assume."
I became too comfortable with my current lifestyle and assumed that my situation would stay the same throughout the rest of my treatments. And we all know what they say about people who "assume."
The reality, of course, is that in life nothing is certain, nothing is permanent, nothing is fixed. But this is what makes life so wonderful, in theory: how each day can be seen as new and fresh and different, with no mistakes in it (yet), and there are hidden surprises around every corner just waiting to be discovered. Then again, I'm not really a big fan of surprises. Case in point.
My surprise came on Monday morning in the form of my doctor telling me that my white blood count was the lowest it has ever been. I believe the exact words he used were "dangerously low." And then I had to get another one of those immune boost shots (not the same shot as the one I'd had after my first chemo session, but similar). And then I was told that I shouldn't go back to the office until my white blood count was back to a normal, healthy level. If that's even possible.
I was, in a word, disappointed. Here is where I realized my error in judgement.
The thing is, I look forward to going back to work. Working helps me to create a sense of normalcy in my otherwise pretty depressing life. I know I am extremely lucky to have a job at which I not only excel but also enjoy. I work hard and feel productive and valued. I see and talk to people whom I genuinely appreciate. I behave like someone who hasn't just gone through a round of chemo.
And, like a fool, I thought my schedule would always be the same every time going into the next chemo treatment. One week of chemo/recovery followed by two weeks at the office. It had worked so well up until now. Luckily, I have the type of job where I can work from home, but it's not the same. It's like I'm completely helpless. My bed is becoming more and more like a cage. I want to be out in the world, experiencing life. The taste of freedom is bittersweet.
I have to keep in mind that nothing is certain, nothing is permanent, nothing is fixed. I have to learn to embrace life's many surprises, both the good and the bad. Otherwise, I will be perpetually disappointed. Then again, maybe it's okay to be disappointed once in a while, so long as one doesn't give up on hope. To borrow MLK, Jr. rhetoric: disappointment is finite, hope is infinite.
And so, while I do feel disappointment, I also continue to have hope. Hope that each day will be new and fresh and different, with no mistakes in it (yet). Hope that one day, I will have real, true freedom.
Freedom from cancer.
I was, in a word, disappointed. Here is where I realized my error in judgement.
The thing is, I look forward to going back to work. Working helps me to create a sense of normalcy in my otherwise pretty depressing life. I know I am extremely lucky to have a job at which I not only excel but also enjoy. I work hard and feel productive and valued. I see and talk to people whom I genuinely appreciate. I behave like someone who hasn't just gone through a round of chemo.
And, like a fool, I thought my schedule would always be the same every time going into the next chemo treatment. One week of chemo/recovery followed by two weeks at the office. It had worked so well up until now. Luckily, I have the type of job where I can work from home, but it's not the same. It's like I'm completely helpless. My bed is becoming more and more like a cage. I want to be out in the world, experiencing life. The taste of freedom is bittersweet.
I have to keep in mind that nothing is certain, nothing is permanent, nothing is fixed. I have to learn to embrace life's many surprises, both the good and the bad. Otherwise, I will be perpetually disappointed. Then again, maybe it's okay to be disappointed once in a while, so long as one doesn't give up on hope. To borrow MLK, Jr. rhetoric: disappointment is finite, hope is infinite.
And so, while I do feel disappointment, I also continue to have hope. Hope that each day will be new and fresh and different, with no mistakes in it (yet). Hope that one day, I will have real, true freedom.
Freedom from cancer.
Thursday, March 5, 2015
Scarce resources.
It used to be that time was my biggest scarcity. When I was first diagnosed, I focused so much on time, time, not enough time. Time to live, time to mother, time to work, time to experience. But I see that time comes and goes like waves on a shore, as it always has before and always will, and I'm still here. Time, it seems, has not forsaken me yet. And I am grateful.
There is a new scarce resource now. I woke up this morning feeling... nothing. My energy is gone. All the strength I had to move, speak, think. Gone. Even my reserves - my "generator," as I called it - is gone. A thief in the night, it crept up on me slowly. And suddenly. It's the worst kind of hangover, complete with memory loss and exhaustion and disorientation.
And worst of all: regret. Regret that maybe I pushed myself too much the day before. Regret that perhaps I took it for granted for too long. And now it's time to pay the piper, but the price is too high.
The thing is, I know why my energy has become such a commodity. It's needed elsewhere, for more important reasons, and I understand that. I can even feel it, this intense war between mutinous cancer cells trying to kill me and poisonous chemo trying to kill the cancer. But, then, there's a second battle also raging, one where the cancer and chemo band together against my own body. And there's only so much a person can take.
They say that when people come upon conflict, they react in one of two ways: fight or flight. In this way, I have no other choice but to fight. My very survival depends on it, after all. And so persevering without energy for the next two months or so is not the end the of the world. Certainly not for me. It just means that my smile may not be as wide or my laugh may not be as loud or my wit may not be as sharp. The important thing to remember is that I'm still here. Just depleted a little.
I wake up each morning, thankful to be given yet another day to live, the gift of time. Every inhale and exhale is precious, a reminder of survival.
Sunday, March 1, 2015
The month of expectation.
Emily Dickinson writes that "March is the month of expectation." How fitting, considering the little expectation I have going into this new month.
Tomorrow will be my third round of chemo. Three out of six. The mid-way point. The colloquial "hump day," as it were. My naiveté had hoped that these treatments, and the subsequent recovery process, would be very much like the month of March: in like a lion, out like a lamb. But then reality kicks in. You realize the lion probably ate the lamb, so March (as well as my chemo recovery in tandem) will probably be more "in like a lion, out like a lion." A well-fed lion.
Here I am again, unable to predict what the future holds for me. If my experience so far has taught me anything it's that every round of chemo is different. I basically have no idea what to expect going into this next infusion. My mind is flooded with all sorts of questions, like, How is it going to be this time: easier, harder? What if I have another reaction? Would I have to switch to a harsher chemo?
And I hate that, because I'm a neurotic control-freak perfectionist.
So I can't think about it, otherwise it drives me nuts. Instead, I putter around the house and drink lots of fluids and distract myself with movies and other forms of entertainment. Steroids give me a voracious appetite, and there are moments where I find myself longing to eat my weight in food. Which is a good thing, I guess.
Also helpful: The cards and gifts and well-wishes and advice and visits and prayers and food and monetary assistance and texts and e-mails and Facebook messages and phone calls and one-on-one card games. To know you are thinking of me and my family, even for a moment, helps me battle this awful cancer in more ways than the chemo ever could. Chemo is a poison, after all, and humanity is the antidote.
I had decided from the very beginning that I would beat this cancer, with the intention of doing it by myself, but it's comforting to know that I'm not alone. It makes the daunting task much less scary and more feasible. And with assistance, I will fight that lion into submission.
My one expectation for March: In like a lion, out like a lamb.
Tomorrow will be my third round of chemo. Three out of six. The mid-way point. The colloquial "hump day," as it were. My naiveté had hoped that these treatments, and the subsequent recovery process, would be very much like the month of March: in like a lion, out like a lamb. But then reality kicks in. You realize the lion probably ate the lamb, so March (as well as my chemo recovery in tandem) will probably be more "in like a lion, out like a lion." A well-fed lion.
Here I am again, unable to predict what the future holds for me. If my experience so far has taught me anything it's that every round of chemo is different. I basically have no idea what to expect going into this next infusion. My mind is flooded with all sorts of questions, like, How is it going to be this time: easier, harder? What if I have another reaction? Would I have to switch to a harsher chemo?
And I hate that, because I'm a neurotic control-freak perfectionist.
So I can't think about it, otherwise it drives me nuts. Instead, I putter around the house and drink lots of fluids and distract myself with movies and other forms of entertainment. Steroids give me a voracious appetite, and there are moments where I find myself longing to eat my weight in food. Which is a good thing, I guess.
Also helpful: The cards and gifts and well-wishes and advice and visits and prayers and food and monetary assistance and texts and e-mails and Facebook messages and phone calls and one-on-one card games. To know you are thinking of me and my family, even for a moment, helps me battle this awful cancer in more ways than the chemo ever could. Chemo is a poison, after all, and humanity is the antidote.
I had decided from the very beginning that I would beat this cancer, with the intention of doing it by myself, but it's comforting to know that I'm not alone. It makes the daunting task much less scary and more feasible. And with assistance, I will fight that lion into submission.
My one expectation for March: In like a lion, out like a lamb.
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