This Saturday, October 1st, marks four years since my initial diagnosis of Metastatic Breast Cancer. That’s four years of scheduling doctor’s appointments, four years of regular blood work, four years of oncology nurses plunging large needles into my port to hook me up to my chemo drugs. When we reflected yesterday on everything that’s happened in that time, Jon and I were taken aback.
A lot can happen in four years… like attending and graduating high school or college. A child can grow from a baby who does nothing but cry, feed, and poop, to a full-blown child who can express their thoughts with words. Four years may not seem like a long time in the grand scheme of things, but it has been a real game changer for me. I have spent most of my thirties battling cancer. I’ve received anti-body treatment every three weeks, lost a body part, fit myself with radiation masks, watched my hair fall out three times, and was told that if I didn’t treat this right now I only had three months to live. Indeed, these last four years have been a vicious roller-coaster ride, twisting and turning perilously before plunging us to the limits of our sanity. Jon and I have clung on for dear life, and luckily we’ve made it to the top of the ride again.
A person’s physique can also change drastically in four years. I’ve watched my body morph from that of a strong and healthy college athlete to an exhausted, habitual drug user with mismatching breasts. (We’re talking legal drugs here, but they still wreak havoc on the body). In the last four years I’ve probably had at least four or five different hairstyles. I’ve become quite friendly with the beautician who regularly cleans my wig at the salon. After handing me some expensive shampoo and conditioner, she said that by Ali’s wedding in January I should have enough hair to cover my head, even the bald spots in the back. While I’m excited about the prospect of wearing my own hair this summer in Costa Rica, nine months is a long time for hair to reappear. That’s right, folks; in the same amount of time it takes my hair to grow one inch, a woman can grow an entire human being from scratch!
This past week has been difficult for me because I just came back from an action-packed Dieciocho week in Argentina with Jon and my parents to a lonely home and the reality of my situation. I work best with deadlines, lists, and legitimate reasons to leave the house. During the work day at my house on Tomas de Figueroa, I don’t have these things. Most of my friends still living in Santiago teach at the school, as does my husband. They are busy during the day and tired when they get home. I also don’t have access to a car so I have to walk or take taxis if I want to do anything. To ease the tedium, a few friends, who also don’t work, and I have agreed to be “ladies who lunch” and plan regular activities each week. Other than finding cool places to eat, we also attend museum exhibits and luxuriate in the ability to see movies in the middle of the day. Those days give me a reason to shower and dress up a bit. (And by dress up, I mean not wallow on the couch all day in my pajamas.) When I am doing something and am surrounded by people, I have more energy, so I am glad to have some fellow ladies who also don’t work.
Not having a real job, though, makes it hard to explain what I do to others who ask. Here is an example of a depressing conversation I’ve had with strangers all too often recently on my various trips:
“Where do you live?” asks the inquisitive party.
“Actually, my husband and I live in Santiago de Chile. This is our sixth year there,” I respond.
“How exciting! What do you do for a job?” asks the inquisitive party.
“Well, right now, I’m actually not working,” I answer after a pensive pause.
“Raising a family is a beautiful job too. How many kids do you have?”
I think for a bit and answer in my mind, “No, no, I don’t stay home and take care of children. I stay home because I have cancer and quit my job because my health made it impossible for me to do my best job. Also, it’s impossible for me to have kids. Thanks for bringing that up, stranger.” The inquisitive party usually becomes less inquisitive at this point in the conversation, so I usually go with the safer response, “I’m taking time off for health reasons.”
To illustrate my recent sadness, let me give you an example of a typical day in the past few months. I wake up in a dark room, without my husband, with only my doggy dos in bed with me. I vaguely remember Jon kissing me on the head before he leaves for work at 6:45. I switch on my cell phone. If I don’t have something scheduled for that day in my calendar, I generally fall back asleep. Since I don’t have a legitimate reason to leave the house, I feel no drive to wake up, shower, get dressed, or run errands. Still wearing my PJs makes it very difficult to do anything but binge watch a TV show. Most times I am able to convince myself this is a good use of my time.
As many people have reminded me, when the subject comes up, there is actually a lot I could do to fill my days productively. I could write, take classes online, start my own cooking classes, buy a keyboard and play music again, read and tan outside on a lounge chair we have yet to buy, or ride the bike I just bought, to the park. First, I need to buy a bike helmet, though, in case I become dizzy and fall off. But you can bet we haven’t bought that yet either… So, yes, there are still things that I can spend my time doing, but it’s easier said than done. It’s hard to go from being a busy go-getter to having no job and nothing that really needs to be done. At the top of the list in bold is: Become a Better Housewife. In order to achieve that I could clean clothes, wash dishes and spend my day watering the garden and dusting… However, that’s not really my cup of tea. Thank god we can still afford Agustina!
Since household chores have been stricken from my list of to-dos, I am not left with a lot to do, other than to meticulously plan my next travel experience. When sightseeing I have things to see and do and time to spend with friends and family. That’s one reason I have been out of town a lot this first semester. In fact, Jon and I just spent the Chilean national holiday week with my parents, who met us in Argentina. I have been to Buenos Aires many times now, mostly on girls’ trips focused on leather shopping and eating good food. Buenos Aires is such a great place, though, that it wasn’t hard for me to find activities for us to do while we were together. We went on a fabulous street art tour put on by graffitimundo, saw a tango show, visited the neighborhoods of San Telmo and La Boca. We attempted to walk through Palermo’s various gardens but unfortunately they were closed. We went to the MALBA instead, a famous modern art museum that I didn’t really care for. After a few days of the big city we flew down south to view the incredible wildlife on Peninsula Valdes. Braving strong Patagonian wind, we saw over 25 endangered right southern whales, penguins, and sea lions. My only disappointment was that it was so windy one day that I was unable to climb down the sand bank to see the elephant seals. To prove how windy it was, after a few paces toward the cliff I was being blown around so much that Jon had to take me back to the car. There was no way I was going to make it down and back up that sand path. The wind gusts (up to 60 mph per our estimate) buffeted me so badly that I was basically a kite flying in the wind, connected to the earth by Jon’s hand. The trip was supposed to be the theme of this blog post because we had such a great time, but I realized I actually needed this blog as therapy for my feelings over the past few weeks.
Jon often tells me how much I’ve changed for the better since that fateful day in 2012. And I agree that I’ve changed, and mostly for the better. If you can believe it, I’m actually more emotionally stable than I was before cancer. I am more patient and I take things day by day. I don’t worry about the small things as much. Who has time to gripe about a grease stain on your brand new bed sheets when the doctor could tell you tomorrow that your tumors have grown and there’s nothing they can do to treat them? Since my health and my survival is really out of my hands, I am more thankful for all that I have been able to accomplish so far in thirty-five years. All of your support and this blog has provided a great outlet for my emotions, both good and bad. It has allowed me to let it out and get on with the business of living.
However, I am human. I worry about my future and how much time I have left before being diagnosed again. Dr. M’s philosophy is not to worry about possible future treatment. He lives in the present, which encourages me to do so as well. At home, very rarely Jon and I ask the big questions out loud. “Are we going to attempt to move to another country? Am I going to go back to teaching? Will anyone ever hire me again? Should we try to adopt, even though the agencies we’ve researched have rules preventing parents with deadly diseases from adopting? Should we go on that expensive vacation to the Galapagos because I might not be healthy enough to enjoy it next year? What are you going to do when I’m gone?” There are so many giant questions hanging in the air and they are all virtually unanswerable. So Dr. M doesn’t address the tough ones until it’s necessary. At our last meeting I asked what the plan would be if my brain tumors enlarged. “Can my body handle any more radiation?” I asked, already knowing the answer. Dr. M said that the tumors weren’t going to get bigger, and, if they did, he would tell me the treatment plan then. He didn’t answer the radiation question and after a few minutes of pensive thought, changed the subject quickly. Jon and I looked at each other because we knew the answer to my question was “No”. Basically, unless a new treatment is invented before brain cancer attacks again, I’m f-cked! Right now my only chance at long-term survival is to find a way to prevent the cancer from invading my brain again.
Dr. M said the best way to do that right now is to take the oral chemotherapy pill, Temodal, and cross our fingers that it works. There is not much evidence, however, that this treatment is effective at preventing cancer from returning to the brain. Dr. M is just hoping that it works because of its effectiveness when combined with radiation. If you remember though, the oral chemo pill pretty much ruined my trip to the states in June. I was too sick to enjoy most of my time there, and even embarrassingly threw up on my closest childhood friend in a public restaurant. Philosophically, I also deeply question the reason for taking the pill. I don’t want to be sick for a quarter of the rest of my life. Ingesting poison for one week every month isn’t really a good preventative method over any amount of time. As a result, I haven’t been taking it for the last two months because I wanted to enjoy my friend’s wedding in Colorado and the recent Dieciocho trip with my parents without being horribly nauseous. (Don’t worry, this break was doctor sanctioned). However, after Dr. M gave me that awkward non-answer about possible future treatments, I changed my mind a bit. I agreed to try the pill again this month and see how I feel. Since my stomach has had some time to calm down from the seven pills I was taking before, maybe it will be able to tolerate the chemo again. Over the past month or so I’ve gone off the steroids and reduced myself down to one hormone therapy pill. The doctor, however, agreed that if my stomach pains ruin my quality of life, I can stop taking the pill.
In thinking about my fourth Cancer-versary, I wasn’t sure if it was better to celebrate or not. My family, friends, and I have gone through a lot these past four years and I really don’t want to think about my disease and my ambiguous future. Living with cancer has changed my life forever, and it’s been difficult. Although I’m still a survivor right now, the future looks grim and I don’t want to celebrate that. However, four years of living with Metastatic breast cancer is still impressive. I want to celebrate making it through those tough times. The long and short is there’s nothing to do but march forward. Hopefully I’ll continue to be lucky and keep adding candles to my pink cake. HAPPY FOUR YEARS to all members of Team Eli!
ARGENTINA PICTURES BELOW:
WHALE VIDEO:Click on the link or video below