Dr. D. you asked me – so here it goes!
In one of my last posts, I mentioned how my oncologist asked me if I was starting to feel normal, other than for the neuropathy in my hands and feet. I understand that she has a medical background and was probably asking me more from a “physical” standpoint if I was feeling “normal” but of course I come from a psychological background. She is one of the most compassionate doctors I know, so I can’t imagine that she would have neglected the psychological aspect of it all, especially knowing that I am a psychologist. I will definitely give her a copy of this post in the hope that she will continue to ask me questions that make me think deeply! (Dr. D don’t you just love me?)
So needless to say, her question made me think… a lot. Do I feel normal? Can someone with a Stage 4 diagnosis ever feel normal again? When you are diagnosed with a cancer of a lesser stage, you typically have a chance at a cure. You know you will have to go through interventions and difficult treatments but you have a big carrot dangling at the end, you will be cancer free and will be able to resume your life. I do not want to downgrade anyone’s experience as getting a cancer diagnosis of any stage is traumatic. When you are told, on the other hand, that you are “uncurable”, there is no shiny carrot at the end of treatment as there is no endpoint to treatment. I was told, as many others with Stage 4 cancer, that I would be on chemo “for life”. You can’t even think about one day going back to your old life, you have to create a new sense of normal, what people often refer to as “finding your new normal”. That’s what you have to do when you know your life will never be the same. It used to be that a Stage 4 cancer was a death sentence but with new chemo drugs coming out, people are starting to live longer. So how “normal” can we feel as Stage 4 fighters and survivors when our biggest hope is to buy more time and keep the cancer at bay for the longest time possible. We live with hope that we will be here long enough to see new drugs and treatments emerge that will keep us alive until new drugs or a cure is found. This is not how the majority of people live.
What is normal anyways? I guess we could all come up with our own different definition. I like to think of normal as the “norm”, as what is considered “usual” and “average”, how most people are and what most people do. So I will write according to this very simplistic definition.
I like to think of my cancer as a chronic medical condition. Most likely, it will have periods of remissions and potential periods of recurrences. Of course the best case scenario would be to beat it and have it never come back but I need to be prepared for the event that it comes back. Having a chronic medical condition is not the norm, the majority of people don’t have to deal with a (deadly) chronic health condition so that in itself, sets me apart from the majority of people, it does put me in a different category. Even though I have been feeling very well and have been lucky to not have too many symptoms, I still feel like I walk around with a Damocles Sword dangling above my head. I never know if/when the cancer cells could return, so that too doesn’t make me feel normal. I don’t think that most people live with this fear. We all say that we could get killed in a car accident on our way to work, on any given day, but who really lives their lives as if this was true? I don’t think that until you are hit with a potentially lethal diagnosis that you start thinking about your own death and fear that it could happen too soon.
It is also hard to feel normal when you are getting chemotherapy every other week. I still hate chemo Mondays and I don’t think there is anything “normal” about being on chemo. I still have a surreal feeling when I walk into my oncologist’s office, I was NEVER sick before I got this diagnosis, taking a tylenol was a big deal for me. I once made an appointment to see my primary care physician and the receptionist gave me a hard time, she was convinced I had been seeing another doctor since it had been so long since my last appointment! Now, every time I walk up the stairs and turn the corner to enter my oncologist’s office, I have to take a deep breath and try to put on my best smile on. I hate being there. Everyone is very nice and happy so it has nothing to do with them and I really try my best not to be that grumpy patient that no one wants to see so I joke around and try to make light of being there. I ask many questions, my doctor thinks its funny but I truly want to know everything there is to know about my cancer and my progress. After seeing my oncologist, I am walked to the infusion room where I always try to choose the most remote chair so that I don’t have to talk to anyone, in fact I wish I could hide where no one would see me and where I wouldn’t see anyone. It is heartbreaking to see some patients deteriorate month after month and I have pictures in my mind that are difficult to get rid off, like this poor man who kept coughing up blood from his tracheostomy. I feel like I don’t belong there. It is rare that I am not the youngest one there. The nurses are used to me and I try my best to use humor to hide my irritability about being there. The other day, one of them was complaining about “Monday” to what I responded, “if you think Monday is bad – try chemo Monday” and we laughed it off but part of me was serious.
There are not too many things that I can’t do as a mother because I have cancer. The big thing is that I need to constantly check my schedule as everything has to be worked around my chemo weeks, so yes, sometimes, I miss out on things that I wish I could do. I guess I could say that, as a mom, I have tried to keep things as normal as I could for my kids. Maintenance chemo has been a lot easier to handle and I never miss picking them up from school, I don’t miss their baseball games or chess tournaments, and we try to be as active as we can on the weekend. Sometimes I pay for it a little but it is always so worth it. However, having my 8 year-old casually tell me, as we were looking for sea beans at the beach, that he will still love me when I am in Heaven (we NEVER talk about death – we always talk about fighting and beating this disease) but for him to even think about this, means that it is on his mind. Of course I know very few other moms who have to deal with this and no this is not normal. I would much rather him tell me that he will never be a sumo wrestler “because I am skin and bones”! I really envy all the moms out there who don’t worry about leaving too soon. So I guess despite the fact that I function pretty normally as a mom, my heart aches in ways that I don’t believe is the norm, I hate exposing my kids to the realities of cancer.
This cancer has definitely slowed me down professionally but again, I have been extremely lucky. I work because I love what I do and not out of necessity. Sometimes I wished I worked more but I am excited about giving a shot at writing a book and refocusing somewhat my work to help others struggling with cancer. This is not unusual, people take sabbaticals, others go back to school to find more fulfilling careers, and many people work part time. All the patients I see know about my diagnosis and so far, I think I connect with them on another level. There is an unspoken understanding of the adversity in our lives. So I guess I can say that professionally I do feel pretty normal.
I have been very lucky to have been surrounded by such supportive and understanding friends. We were definitely less socially active during the intense chemo but we are getting back in the swing of things. I never want cancer to be the topic of the day. I’ll answers questions people have but I have been known to say “enough cancer talk” and move on. Do I feel normal in this realm? not always. I feel like my diagnosis follows me everywhere. I have chosen to be very open about it which has its pros and cons. Sometimes I wish people didn’t know, I don’t want to be known as the “mom with cancer”, but I think it is pretty inevitable. I do think that in some cases my diagnosis has made some friends open up to me more about the difficulties in their lives while others I think fear telling me about their trials and tribulations. I guess it would be hard for a friend to complain about a bad hair day to me, or complain about being constipated for a few days when I have colon cancer. I keep telling my friends that I would rather hear about their problems than to focus on mine, at least most of theirs can be fixed in time… As a whole though, I would say that it has brought me closer to my friends and I feel very fortunate.
Physically, with my hair coming back, I don’t think people can still look at me and know that I have cancer. On chemo days I try to hide my pump as best I can but with summer being here it is harder to hide it underneath a bulky sweatshirt. I have caught looks and stares at the tubes sometimes coming out of my clothes and have had a little one ask me if I was pregnant! So no, that doesn’t feel normal. Some days I feel more self conscious than others wearing a sun dress or bathing suit and having people stare at the big bump in my chest (my chemo port) and wondering what it is – so physically I can’t say that I really feel normal.
So if I compare myself with the “majority” of people, I don’t feel so normal. The next question then becomes “do I feel normal” as a cancer patient”? What I am about to say may sound arrogant and/or pretentious but please follow my logic to understand what I am saying. I sure do not want to be a “normal” cancer patient. First, I hate the word “patient” and try not to use it, it has the connotation of being ill and sick. In my mind, if I am “normal” when it comes to cancer, then it means that I will fit into the statistics and my grim prognosis. I don’t want to be a normal cancer patient, I want to be one of Bernie’s Siegel “exceptional” patients, one that beats the odds, one that can inspire others, one who can find what it is that makes people beat this disease so that I can help others make it through.
So there it is Dr. D., no I don’t feel normal and that’s ok, this is how I want to feel. I want to be as “abnormal” as possible to show you and everyone else that cancer can be beat!