“You seem to know what you’re doing.” Hearing those words made me pause and think. Do I really know what I am doing? My life seems to be a form of organized chaos and I am usually putting out fires somewhere in the halls of my diagnosis and managing being a mother and a wife and a somewhat normal human being. My ducks are never in a row. They’re more like cats. Ever try herding a group of cats? They look at you, lick their paws, squint and do whatever they want anyway. This is my life.
The more you know, the more you know that you don’t know. I’m not an expert on anything, not even on my health. I know who I am and my quirks (I’m straight up hella quirky and like it that way) and personality. I thought I had a handle on my body and health but breast cancer threw me a huge curve ball and the bitch keeps on pitching some fast balls at me.
I thought I knew what breast cancer was. Nope. Not even close. As I’ve written previously, it’s a crazy combination of positives, negatives, hormones, proteins and a whole bunch of other letters. I’ve tried to become an expert on my own specific one, but I am not. Researchers and oncologists are still learning and making advances so I defer to them for advice and treatments. Should you find myself in cancerous shoes, learn everything you can about your diagnosis. Don’t learn from the internet but rather from talking to your doctors. Knowledge can be scary but the more you know, the less surprises you will have and you can be better prepared for cancers little curveballs. Believe me, the bitch can pitch!
I thought I knew what chemotherapy was. I was so wrong. Chemotherapy is a combination of drugs given in various intervals, each with their own set of side effects. It is not one size fits all, not even within the realm of the same cancer. I thought chemo was uncomfortable. It’s not. Accessing the port is a tiny pinch, no worse than a shot. After that, you feel nothing. Nada. It’s boring as hell. So totally not what I pictured. The side effects are w whole different story. Nothing really can prepare you for it as you never really know which ones you’ll get hit with. I got through my chemotherapy protocol relatively unscathed and consider myself very lucky.
Before any chemotherapy started, I was given a chemo class. A tour was given, the process was explained and then the side effects of each drug given. It can be intimidating. I went in with the frame of mind that I would learn as much as I could so that I could stay healthy and ahead of the side effect curve. For the most part, it worked.
Now with targeted therapies, there is a whole list of new side effects, some benign, others a little scary. I’m on Herceptin and Perjeta, which are game changers in the world of HER2. Just ten years ago, my prognosis would have been dim at best, so, this combination is giving me my best shot at a complete life. Going through the list of possible combinations of gifts, here’s what I got hit with…headache, back pain, flu like symptoms, rhinitis, dizziness, decreased appetite, mouth sores, muscle aches, joint aches, abnormal taste, itching, watery eyes, difficulty sleeping and dry skin. I have a tiny bit of peripheral neuropathy on my feet, mainly the toes. It’s not very painful, just really annoying and weird. Trust me, this isn’t awful compared to what could have been my side effects. “A serious but uncommon side effect of tastuzumab can be interference with the pumping action of the heart…” No worries, I’m being closely monitored and the damage reverses itself once the Herceptin stops. I'll be back at the cariologist for another echocardiogram, my third, in September.
Most people associate the lousy feeling with just chemo and surgeries. Surprise. On any given day, the way I feel is like a roller coaster ride from Hell. I can’t get off the coaster so I grip and close my eyes and just deal with it. Once we are off of chemo, sometimes during, our hair starts to grow back so we start to look a little more like ourselves, whatever that means. Because of that, sometimes I think people make the assumption that we are ok. Trust me, we are not always ok. Some days are easier than others and I just plow through. Sometimes I wish this information was out there so that people other than cancer patients and their medical team would understand this.
I go to the gym 5-6 mornings per week and get a minimum of three miles in each time and lift some weights. I need to do that for myself. It’s my gift to my body for tolerating the craziness of the past 11 months. I want to know I am doing everything I can to keep my heart strong in the hopes that I won’t get the decreased heart function. Do I know that exercising will help? Nope, not at all. I am merely guessing and trying to keep my heart healthy, the way a non cancer person would. I am learning along the way.
I still make my green smoothies daily, making sure I get mega doses of good nutrient dense fruits and vegetables in to my recovering body early in the day. I have no evidence that this truly works but have been able to keep my numbers (hemoglobin, WBC, platelets, etc) within good ranges and avoid delays and postponements of treatments.
I get tired, easily. Very easily. I take advantage of my spurts of energy but sometimes really just want to spend a day chilling on the couch. That’s a little tough during the summer as guilt takes over and I need to get myself up and out with the kids. It’s the mom life. I get it and the guilt part is hard. I’m working on that. No one can take care of a cancer patient, only we can. We know our bodies best and we are the only ones who can truly give us what we need. It’s a little weird but true. I am the only one who can keep me going and sane and as unscathed as possible until all of this treatment is over next year. If you’ve gone through treatments, not just an operation, you’ll understand what I mean. No one understands a cancer patient like another cancer patient. It is true, we need to support each other and share as much as we can.
It was and still is important to me to learn as much as I can about the therapies I am going through so I can keep myself as healthy and useful as possible. If it seems like I know what I am doing, I don’t. None of us do. I am stubborn and feisty, following doctors orders to the letter is tricky because of that. I have things to do and down time makes me a little uneasy. So I push myself as much as I can. I haven’t and won’t live like a cancer patient. I think a sense of normalcy has been my saving grace in this journey.
In the oncology realm of people, we are all taking our best guesses and learning from each other. No one is really an expert on anyone, I’m not even an expert on me. That doesn’t scare me. Think about that for a moment. Would it scare you? How would you approach the cancer life? Would you withdraw and not share or would you be as loud and open about it as I have been?
As I approach my Cancerversary, I realize I entered this realm not knowing anything and still only know a tiny fraction about my particular cancer that I HAD. Along this journey, I have been hoping to teach people about it and remove the shroud of mystery surrounding diagnosis, biopsies, surgeries, treatments and other services afforded to cancer patients. I am also hoping that people around cancer patients learn patience and compassion for those going through treatments and perhaps give a little advice as to what to say/not say or how to truly help someone in treatment. I look at what I have done to help myself and really hope that it helps someone else. I am looking to put a spotlight on the word HOPE. It’s what I needed last year, it’s what I have now and what I want to pass along to the world.
Comments