This is somewhat unusual as it is not really a celebration of any sort, but rather, a time to reflect about some gifts in life that not always come in pretty packages with golden ribbons. It took me a great deal of thinking to finally open up and share something so personal and especially in a medium like this. We can only take the best from our experiences and turn them into something powerful. Here is my story and how it changed about 3 years ago, about finding the diamond within to a more meaningful approach to life. Here is a little story of what came about to change my life…
Up until 2011, my life was good, I mean, I was happy, had a job, and a healthy family. I started the year doing what I loved, which is traveling. I took some friends to visit Peru, and before the end of the year my best friend and I went to Seattle and Vancouver, Canada to see our favorite band Pearl Jam. Then, in September I had the first sign that something wasn’t right. I had a panic attack while I was in the train on my way home. Along with a horrible feeling, I had a sharp, numbing and tingly sensation on my right back and shoulder that went down my arm to my hand. That really freaked me out and I panicked even more thinking that it could get worse. I’d had upper back pain for some time that neither physical therapy nor a chiropractor could help. As a last resort, I was prescribed a muscle relaxant for the pain and anti-anxiety drugs for the panic attacks. Of course the first things a doctor will recommend. But deep inside I knew something was wrong and I also knew drugs were not the way to solve it. This was the first time I disagreed with western medicine and the overuse of drugs as a rapid way to alleviate pain instead of trying to get to the bottom of the problem. I requested an x-ray because it literally felt as if something was there.
Indeed, there was an intruder, something that looked like a tumor with the possibility of it being a lymphoma, in simple terms, cancer. My heart got heavy, I felt cold, shaky and of course I was in denial and immediately associated cancer with death. I was referred to an oncologist and with that started an infinite series of doctor visits, biopsies and scanning tests. A biopsy showed that it was a benign nerve tumor (Schwanoma) coming out of the spine, but it was not lymphoma and it could be removed, ‘phew’, I thought “let’s get this sucker out!!” However, there was more. In a previous CT scan, doctors found some abnormally large lymph nodes in the abdominal area that was concerning. ‘Great! Now what!!!!!’ More doctors visits, imaging tests and another biopsy revealed that THIS was lymphoma. To be specific, it was an “indolent follicular non-Hodgkin lymphoma” that was throughout my body, but ‘not active’. So I thought, fancy name, must be a character. As a scientist, I always thought that things with long names are somewhat interesting and deserved attention.
Since that day in February 2012, not only my life was about to change but also that of my loved ones. It started unraveling in ways I could not describe in words. I vividly remember the day my oncologist (Dr K) told me I had cancer. Not only that, but because NHL affects the immune system, it meant that it is throughout the whole body, specifically the lymph nodes. To make this more real, I was presented pictures of some scans that showed ‘hot spots’ (sites of higher cancer activity) in various areas in my body. All of a sudden my body became a battlefield. It felt like a punch in the heart followed by a sinking feeling as if I was free falling, but without a parachute. Cold feet, cold hands, vulnerable, nothing made sense, and even when people tried to talk to me I didn’t know what they were saying and didn’t even care to know. Everything and everyone was irrelevant and non-existent at that moment. Right away, thoughts came to my mind: long chemo treatments, losing weight and hair, painful nights, and a family turned upside down, and the deepest worry of who will take care of my mom?.
Then it hit me, this is the same fucking cancer that took my ‘mamita’ (grandma) away! I was furious and devastated at the same time. Pictures of her being ill came to mind and immediately I felt a connection that brought me closer with my grandma, and in a sense
I felt that now it was my turn to fight this cancer for the both of us.
Non-Hodgkin lymphoma is a cancer of the lymphatic system, in order words; the immune defense mechanism is jeopardized. It is a slow growing cancer and often diagnosed when it has progressed enough to cause symptoms. In my case, it was discovered incidentally, because I never had symptoms. In a way the nerve tumor was a blessing in disguise to alert me that there was something else to be aware of. At the time of the diagnosis, I was told that the cancer was ‘dormant’ – the cancer cells were just hanging out but not causing damage. At this point conventional therapy is not considered because it does not guarantee the cancer would not come back. In fact, treatments in NHL early diagnosis does not improve the survival rate; on the contrary, any therapy (chemotherapy) would actually have a detrimental impact on the patient. Nowadays, it is becoming clear that the toxicity of conventional treatment often times is more damaging to the body than the cancer. Yikes!!! That is actually worst than the cancer itself!
My doctor explained the options, and that I was actually given the chore of a surveillance agent, almost as if I was in an espionage movie. I was in the ‘watch and wait’ episode in this movie of my life. But what does watch and wait mean? Wait for what? Wait to die? Ugh, I didn’t like this assignment given to me. Watch and wait means that when the cancer is so lethargic or slow (great! Not only it was cancer but a stupid one, but to my benefit!), the patient has to be watchful for any changes in the body, any signs of symptoms and then take action which pretty much means chemotherapy. Non-Hodgkin lymphoma is not a type of cancer that only targets one organ, and it is slow growing because the immune cells are automatically trying to fight off the intruder. That means that it will take a long time until symptoms become noticeable. Most patients diagnosed with NHL are in their mid to late adulthood, on average, not very common in young adults. To me this meant that in the midst of the silent battle between the good and the evil of cells, the person’s lifestyle and habits could play an important role in the outcome of the war. I strongly believe that! And you might be wondering what happened to the little Schwanoma intruder? As a birthday present, it got it removed 2 days after my birthday in July of 2012. It was scary but a relief at the same time because the shooting pain, tingling, numbness and soreness slowly diminished to being gone now.
I still don’t understand many things, or why they happen to anyone for that matter. Why with all the science and money invested in technology, we are still struggling to understand many chronic diseases like cancer, and have yet to find a cure for it. However, Dr K explained that now, with all the new technologies, there are promising therapies. Even better, maybe if I need to go under treatment in the future, there could be a better choice than what we have now, and maybe a cure. The key word here is ‘time’. Hopeful thought. She remarked that like any other chronic disease, the cancer is present; waiting like a haunting thought, but it is somewhat dormant, ‘inactive’. To me, it felt as if I was left in a room with a lion in a cage. Do I feel safe or trust that the cage is strong enough? No, no matter if it is trapped, the lion is still there, making eye contact, fiercely roaring and making his presence known. It is up to me to make sure that cage stays strong, closed and locked to keep that lion back. It is a mind teaser because any pain, tiredness, or even an itch triggers the inevitable question: “Is the cancer awake? Is it game on now?” It is something ingrained in my mind and it’s all up to me to control the anxiety followed by the anticipating feeling of defeat.
Every day I am given the chance to take control of my health and maybe, just maybe the ‘watch & wait’ part is not so bad if I can prevent anything from progressing. So far I think I am doing a good job. In my last check-up a PET scan (a scan that detects cancerous cells in the body) showed that although there are still cancer cells throughout my body, the lymph nodes from the abdomen are actually smaller in size by 50%. That is great news to me, because it means my immune system is killing off some of the cells. In my mind, it meant that my efforts to change the course of a disease are working. It was that affirmation I needed to keep me motivated because I am changing the rules of this game, andhopefully help others by sharing my journey.
My grandma left 17 years ago due to NHL, and my deepest appreciation and respect goes to her and every person, who have left us without an answer to the question, why me? We might never know, it still haunts my thoughts, but I’ve taken a different approach and would like to think that IT WAS ME BECAUSE CANCER NEEDS TO BE CHALLENGED. Most importantly, I believe the experience I am getting form this is preparing me mentally to better approach difficult situations and how I can be of best benefit for other people who at some point in their lives find themselves in a pit.
I try not to question anymore, but instead I take my experience and learn from it. Like every process of development, it takes time to learn, adjust, embrace and make changes necessary for optimal health. I can’t completely say that I’ve accepted this situation. I might not get all my questions answered but in the process of searching, I learned so much about myself, how my body works in relation to the environment. It took some time to assimilate the situation and get used to this way of thinking and commitment. It’s is a constant process of learning and accepting one day at a time, with its own trials and tribulations. Some people said that discovering the disease was a blessing in disguise. I’m still trying to wrap my head around it, as I don’t think it’s necessarily a blessing because the cancer itself doesn’t bring me joy, but the changes I’ve made allows me to enjoy life a little differently, in a more enlightened way.
Would I rather not have cancer? Yes, but do I have a choice now?
Does cancer define me? No, nothing about cancer has power over me or owns me. It might be in my body, but not in my mind, at least not having a negative effect.
How can I live with cancer but still enjoy my life? It’s about mindset and how I chose to live my life. With this, there is commitment, determination and accepting changes in my lifestyle. Living one day at a time to the fullest while still having goals and taking action towards them. There will always be gray days, but if I only focus on them I will be missing on other wonderful things and sunny days.
How can I deal with all the anger and frustration? First of all, give yourself the time to grieve and let all emotions out. Healing starts from within and it’s best not to hold any resentment and anger especially towards oneself, our actions or our body. When we let go of barriers and feelings that are holding us back, then we are set free. I’ve come to learn about vulnerability and compassion with myself. I am not angry anymore, if anything thankful for the lessons, the opportunities, my faith and trusting that no matter what I will be ok.
How can I focus on my dreams and goals when I don’t know what’s going to happen? In reality, we never know what is going to happen. But instead of living afraid and unresponsive, I chose to be active and take actions with my nutrition and state of mind. My family and my goals are my driving force and that’s what I focus on. Knowing that there are people who love me and I love them back, that I have a purpose in life and especially knowing that I can inspire and make a difference in people’s lives with health coaching is what keeps me motivated each day.
Now, I understand what it means to be vulnerable and what it feels like to be labeled with the C-word. Wait a minute! I don’t like C for cancer, I like C for COURAGEOUS, yeah that sounds better!. I still love to be a Cancerian though, and I do believe some of the traits of my zodiac sign are spot on with how I am. 🙂
Now I no longer wake up and look at myself in the mirror and see cancer, what I see is a beautiful soul, a person who embraces life from all different ways, I see opportunities awaiting for me, I see a strong woman who will not be defeated because I know that I am giving all my best, that I am living my life with passion.
With love and gratitute,
One more thought…
… and if you have a story to share, please do so bellow in the comments.