So, it's been five years since I woke up from the dreaded colonoscopy and heard the ominous words "You have a tumor." One more day wait for pathology report and I would hear even worse news, "It's malignant, it's cancer." I remember dropping my phone and feeling like everything around me stopped, I was all alone, just me and the cancer, even though my husband was just in another room. He walked in, saw my face and my phone on the floor, we fell in each other's arms and started crying uncontrollably. Our three-year-old son and twelve-year-old daughter were at their schools, we didn't have to control ourselves, we could let it flow until there were no tears left to cry out.
Thus started an emotional rollercoaster which, though with less intensity, is continuing till this day. Different emotions for the patient, different for the caregiver, but equally strong, at times debilitating. Moving from the darkest place to the smallest ray of hope and back. Dealing with low level anxiety all the time and with sheer panic before every test, scan, or procedure. Copying with guilt every time I try to celebrate a triumph of remission: "How come I am so lucky and still here while X who had the same prognosis has died already a year ago?" And the constant thought lurking in the head: "Will it, or when will it, come back?"
National Cancer Institute discusses several stages of emotions one might encounter during and after the illness, treatments, recovery, and in the life "after cancer."
1. SENSE OF OVERWHELM
The initial diagnosis, especially since received in younger age (I was 46), created a shock followed by being extremely overwhelmed. I was told on the phone (not the best practice I would think) on one day, and the next day and weeks I had to report to work, continue being a wife and mother, deal with life in general, while trying to figure out what will happen next:
How long do I have?
Will I see my kids grow up?
How do I get "it" out of my body as fast as possible?
And then the host of practical considerations:
Who do I see next?
How do I find the best doctor?
What will my insurance buy me?
What is the prognosis?
The last question was particularly hard on me. I threw myself into every online source I could find to know about colorectal cancer, and of course the harsh statistics, the description of treatments, and patients and caregiver stories mostly without happy endings were horrifying if not paralyzing.
“I have learned over the years that when one’s mind is made up, this diminishes fear; knowing what must be done does away with fear.” —Rosa Parks
What has helped me in these initial days after the diagnosis was to stay busy with work and to keep with my routine as much as I could: I would still prepare dinner every day, I would still put my toddler to bed, I would still talk to my pre-teen before bedtime. It was hard to be fully present, the thought always trying to go into that dark place, but having something to do was keeping me from just curling up on the floor and cutting myself off from the world.
"When you were first diagnosed, you may have had trouble believing or accepting the fact that you have cancer. It can be helpful because it can give you time to adjust to your diagnosis. It can also give you time to feel hopeful and better about the future." (NCI website)
I have to say, I personally never felt denial during my illness. It might have to do with the fact that I am a very practical person, down to earth, believer in science and hard facts. Once I was shown the picture of the tumor from my colonoscopy and the pathology report about the tumor's malignancy, how would I be able to deny the fact that I was ill.
Yes, I was angry. I was furious at times. "Why me?" "Why now?" "I have two young babies to raise, how can I be severely ill, maybe dying?" "What am I being punished for?"
I wasn't an angel in my youth: I didn't eat optimal diet but who does when they are young? I partied, enjoyed occasional alcoholic beverage, I smoked until my pregnancies. But the last three years prior to diagnosis, I was a poster child for healthy life-style. I joined a gym, I did indoor cycling and yoga, I became a strict vegan, making my own healthy vegan food, I even started meditating. I felt so healthy, I lost tons of weight (I thought due to veganism and exercise, but maybe it was simply due to the cancer developing). So, I was angry that despite all this effort, despite embarking on this path to perfect health I got hit with the worst disease out there, the killer cancer.
Then there was anger at people around me: feeling like they don't get it, no matter how supportive they were. And then the anger my myself for feeling angry at those trying to help me.
"There are two things a person should never be angry at, what they can help, and what they cannot." Plato
If you feel angry, you don't have to pretend that everything is okay. Talk it out with family or friends or journal about it. Or cry. That's what helped me on occasion. Besides the anger was just temporary. Once I knew more clearly what the process of treating the disease will be, I was able to focus my mind and emotions on that.
Worry and fear, my constant companions! A few weeks before I was diagnosed, my husband booked a flight for himself and the kids to go visit their Grandma. I couldn’t go since they had a full week off and I had only two days off work. At the time, I was looking forward to this week alone in the house. I planned to do a juice fast and spend my free time reading and playing with the cat. Well, and then they left barely a week after we heard the news. Being alone in the house was horrible! Nothing to do but consult Dr. Google, get all the confusing info about the course of treatment, what to do, what not to do, etc. I didn't know anybody who went through cancer, I didn't know of support groups yet, I didn't even know about the course of action my team of doctors would design for my case, heck, I didn't even have a team of doctors yet. I was totally overwhelmed and felt utterly alone, scared, and sad.
Will it be operable? And what if it is not?
Will I have chemo and what effects will it have on my overall health?
Will I have to get radiation? If yes, will it cause secondary cancers?
Will I be able to keep my job? If not, where will I get insurance to get treated?
How will my kids react to my illness, my treatments, and my changed appearance?
How to talk with the kids? Keep them in the dark or tell them what's coming down the pike?
Will I survive or will I die?
A co-worker who I told about my illness put me contact with his wife who went through two cancers already. She called, she let me cry on the phone even though I have never met her before, and then she went on to discuss her situation and how she managed to overcome the beast twice and assured me that it is possible. This phone call was a true Godsend! It helped tremendously. All of a sudden, I realized that there are thousands affected by cancer and of course many succumb to it but also many survive it and there is no verdict on me out there. I had my first glimmer of hope and some concrete suggestions from an actual patient how to cope with my new situation.
Some studies even suggest that people who are well-informed about their illness and treatment are more likely to follow their treatment plans and recover from cancer more quickly than those who are not. (NCI website)
Balancing fear and hope is a difficult but doable task. I had to learn how to do it and it took me about two years since diagnosis to figure out how to cope with worry (anti-depressant helps).
I tried to surround myself with hopeful people, including mu doctors -- when my first oncologist retired after one year of treating me, a great guy, with an amazing bedside manner; I was assigned another doctor. He was well trained I'm sure and knew his craft, but every time I visited him, I would come out of his office crying and shaking with anxiety. He would through the dreaded statistics at me: 10% chance of survival beyond 5 years; 90% chance of reoccurrence within two years, etc. I could not deal with it so I fired him and got another doctor, one who doesn't hide research from me, but one who never treats me like a statistic.
You’re not a statistic. If statistics mattered, nobody would play the lottery and we’d have a lot less doctors. (Anonymous)
I joined support groups, locally at a physical location: a wonderful center called We Spark in Sherman Oaks, CA. They offered not only individual and group support groups for every stage of cancer (in treatment, in remission, grieving group, caregiver group, adolescent group, and more), but also different complementary treatment modalities I could try (yoga, reiki, chi gong, acupuncture, reflexology, hypnosis, and more). Being there with other patients became a second home, a place I could be myself and free to express all these different feelings rushing through me and which, sometimes, I felt timid about expressing at home.
I also joined Facebook support groups for patients and survivors, I read their stories and advice, posted questions and my own bits of wisdom gained throughout my treatments, befriended lots of people from around the world who were in the same boat as I was. I loved my group, I felt empowered being there, I felt hopeful and spend a lot of time there until... many of my FB friends started dying. Even though I knew these people only as their profile pictures and stories< it hit me really, really hard. Every new death would bring a whole host of emotions with it: fear, anger, guilt. I befriended a woman who was going through exactly same treatments I was going through, just about six months earlier. We talked on the phone occasionally, and she was a great source of knowledge and encouragement for me. She was a few years younger than I, and she took the illness with amazing sense of courage. I was always amazed how optimistic she seemed, how easy-going about all the stuff going on during and after treatments, how she was able to take even the worst setbacks in strides. When she passed away at the age of 46, two years into out FB/phone friendship, I was devastated. Full blown depression set in, I started medicating for it, but I also knew that I had to take a break from that FB group. It became too much to deal with all the loss, and I am only slowly returning now, trying to offer assistance to new patients who are going through what I have gone through.
Managing depression has been a difficult task for me. I tried to avoid getting prescription drugs for it, as I knew that I am already overburdening my body with chemotherapy and radiation. I tried meditation many times, and failed many times. I tried guided imagery and I couldn't focus and was getting angry at how unimaginative I was. Depression has many faces, some of them purely emotional, others physical. Some common symptoms ofdepression are (adapted from NCI article on emotional health of cancer patients)
Feelings of sadness that don't go away
Feeling emotionally numb
Feeling nervous or shaky
Having a sense of guilt or feeling unworthy
Feeling helpless or hopeless, as if life has no meaning
Feeling short-tempered, moody
Having a hard time concentrating, feeling scatterbrained
Crying for long periods of time or many times each day
Focusing on worries and problems
No interest in the hobbies and activities you used to enjoy
Finding it hard to enjoy everyday things, such as food or being with family and friends
Thinking about hurting yourself
Thoughts about killing yourself
Some people will have physical symptoms and/or undergo body changes:
Unintended weight gain or loss not due to illness or treatment
Sleep problems, such as not being able to sleep, having nightmares, or sleeping too much
Racing heart, dry mouth, increased perspiration, upset stomach, diarrhea
Changes in energy level
Fatigue that doesn't go away
Headaches, other aches and pains
It is probably safe to say that virtually everyone going through a major illness like cancer would be affected by some form of depression. I certainly was, even though I never thought of hurting myself in any way. Looking in my kids’ faces would always pull me back from the abyss and slowly but sure I would find the way into the light again.
If you are experiencing any signs of depression, discuss it with your doctor. I strongly suggest getting with touch with palliative care specialist (contrary to some opinions palliative care is not only for hospice patients and those really on their way out of this life; palliative care provides various services, including social worker advice, psychiatric evaluations and treatments, integrative care modalities, pain management, etc.)
I've experienced two types of guilt in these past five years:
First, feeling guilty for having caused or contributed to my cancer (by lifestyle, nutrition, stressing too much, relaxing too little, smoking and alcohol, not running to the doctor at the first sign of trouble). It took me some time to realize that even though lifestyle choices do play a role in disease development and progression, cancer is a lottery game: children get cancer, health nuts get cancer, marathon runners get cancer. There are so many potentially contributing factors to my illness: mercury tooth filling, root canals, the fact that I've been living in polluted cities like New York and Los Angeles in the last 20 years, the fact that I was suntanning on the day when the radioactive cloud from Chernobyl passed over my country, Poland. Playing the blame game is not helpful in any way. Better stop it before it eats your mind. Focus on now and the future.
“Don’t look back–you’re not going that way.”Mary Engelbreit
The second type of guilt is the survivor's guilt. Through my FB group I met a number of local colorectal cancer patients and survivors, and we have been meeting on and off for a few years. I have a photo of about seven of us, meeting for a nice brunch in 2017. Of the seven, only two, me included, are still on this Earth. This is why, on this fifth cancerversary I have such mixed feelings. I'm not even sure I can call it celebrating because I feel that celebrating my life might seem like belittling their deaths. Such beautiful people, overwhelming majority under fifty, vibrant, hopeful, fighting souls, all gone too early.
Last, but not least, there is gratitude. Even a couple of years ago, I got literally mad when someone would say: "Cancer was the best thing that ever happened to me." Really? Going through three surgeries, multiple hospital stays, rounds of chemo and radiation, losing half of your body weight and most of your hair, dealing with horrendous side-effects, "best thing"? I still don’t believe it, but I learned to appreciate certain things that having gone through that illness taught me and the people I met and befriended:
Enjoying the moment, staying in the present rather than dwelling on the past and too far in the future (although I do think about the future quite a bit, envisioning what life will be like in five, ten, twenty years with me in it)
Discovering ways I can create a legacy for my kids: writing down memories from my home country, transcribing and translating correspondence between my Polish family and myself so that my kids can read it some day and learn about their heritage
Finding a new hobby: gardening. Originally just an idea to utilize the abundance of sunshine here in California to create a home garden, it turned into a major stress relieve and anti-depressant for me. I love fiddling with seeds and seedlings from late winter on, then planting them into the ground and watch them grow, and finally enjoying the deliciousness of home-grown veggies and herbs. From seed to table, nothing can beat that.
Forging friendships for life: Through my participation in a group counseling session I befriended a wonderful and wise woman who is not only a friend but a family now, a surrogate sister-mother for me and a grandmother for my kids. (Love to you, Anne!)
Strengthening the bonds with my husband: we have had a great marriage prior to me getting sick, but going through this experience together added another level to this relationship. Seeing him stay strong for me and the family, taking over the bulk of household chores to alleviate me treatments, carrying for me always, never complaining about anything. He is my rock and always will be (I <3 you!)
If it is still difficult to see the good in the situation, start writing a gratitude journal. It helped me a lot. Sometimes we don’t notice the beauty in everyday gestures, in tiny moments of happiness, unless we remind ourselves of them through reflection.
So much for now. Please drop me a note and let’s discuss emotions further. Love to all!