How would you respond to the question, “how are you”, if you were still alive three years longer than anyone had expected? Wouldn’t you be inclined to say, “great!”? Don’t you have an obligation to be great? After all, you are alive!
And I am great. That’s how I respond when my doctor asks. I am alive. I stay alive by focusing on the positives. I highlight my accomplishments and ignore my failures. In the context of life or death – my life is friggin amazing!
If I weren’t living in this context, however, and someone really wanted to know how I was – I’d answer differently. I’d have higher expectations for my life, my health, my emotional health. For the sake of anyone reading this, who is struggling with cancer, I need to come clean. The following is a “day in the life” of me living with cancer. I would never confess this to anyone, but I have recently become aware that I am fooling people by making them think I am “normal” again. I’m not. I will not repeat this again because I choose to remain positive and think in the affirmative. After this – I will only post in the context having survived three years longer than anyone thought I would – including my doctors.
I struggle to get up in the morning. I am so tired. The fatigue depresses me and so that adds to my struggle to get up. I hear Kevin and David up and so they provide me with the motivation I need to put my feet on the floor. My first few steps hurt – the pain from chemo (neuropathy) or the pain from the antibiotic that damaged my tendons have never left me. I try to re-direct my mood as I walk down the stairs so that no one has to leave for the day thinking of my gloomy face. I am happy I can walk.
Kevin greets me with a coffee and a kiss. This helps me to smile. I sit on the couch, turn on the weather to see what kind of a day it will be. The first few sips of coffee don’t go down well – my taste buds have changed and coffee doesn’t taste as good as it used to – no biggie, but now the acid hurts my stomach. I drink water to ease the pain. Kevin and David scurry about getting ready for their days – rarely do I have the energy to help David with his breakfast or his lunch. I am grateful he likes left-overs from my home-cooked meals – I feel I am at least doing something to help him.
They leave. The dog greets me – hoping I’ll take her for a walk. I know I have to eat first so that I can take my six over-sized pills an hour later. Do I have chocolate milk? That is the only thing that helps me swallow those suckers without gagging. I prepare breakfast slowly – watch a cooking show or two. I wait for my energy. On good days, I get up, get dressed, and walk the dog. It is on those days, I can create my agenda of things to do. I am good for another couple chores. Nothing past 5pm. I just don’t have the stamina. I am so grateful that there are no expectations for me to work past 5 pm. I am so grateful on the evenings when I can stay up past 10!
Once I’m home, I feel better. I’ve at least had some exercise. That is a feat for me! I shower, then do dishes, tidy the house, do laundry.. something – but not everything. That’ll take me all day. I chose my chores wisely so that I am not too tired. I see what needs to be done and recognize that three years ago – I’d have everything finished in an hour. If my back is sore, or my side is sore, or if I feel my scars stinging, I put the heating pad on – and rest. Good time to do so when I’m taking my pills – upstairs with my warmed up chocolate milk. Playing Candy Crush or writing a blog post helps distract me while I take my pills – I am NOT a pill taker and I have six in the morning and seven at night. I never forget to take them. They are saving my life. It takes me between 10 and 15 minutes ‘ish’ to finish the pills – which fill my stomach to give me an “I’ve over-eaten” feeling. Half hour later, they give me intense heart-burn which I can eventually relieve with water and by standing up. I am so grateful that I can still eat, breath, walk, and talk. I can even sometimes ride my bike, climb a hill, do a step-class, or kayak. Sometimes. That’s all I need.
What to do next? I’ve not made any commitments because I’m not sure if I’ll have the energy to keep them. Some days, I’m simply emotionally drained. It is difficult to put on a face for the public – don’t want to drag anyone down. I suffer from social anxiety. Crowds drain me. Some days, I’m good. Most days I remember to count my blessings. That helps. If I go back to bed in the morning, I usually stay there. I’m not sure if it depression or actual physical pain from my cancer, my meds… whatever it is – it makes me want to just get the day over and wait to try again the next morning. I am so grateful I don’t have to work. I miss teaching and contributing to society terribly. I don’t know how I would be able to function in a job right now, though. I wouldn’t be able to be in a crowd, to multi-task, to get up, to meet the general demands of a job. How lucky I am supported by a disability plan which affords me the peace of mind I need – when cancer has already placed an enormous burden on my family and I. I am so fortunate I have the desire to give back when I can – to help others when I can – to have another day to recover.
This sounds so depressing – when I am being honest. I don’t like writing this out because I don’t want anyone to get the wrong impression. I like to forget the pain, the sadness, the fear, the anxiety. So – I focus on the good. I am alive. I open my eyes when I walk – I really open them to try to enjoy the beauty of nature. I do. I purposefully breathe. I am so grateful that I can live in the positive, and shut out the negative. I can stuff the bad things and focus on the good.
I have my inspirational days – I am working on a project to honour a dear friend’s memory. I have a tough time committing my energy because I’m not sure when it will come and I want to have that energy to cook dinner for my family. It is actually a choice. Cooking a good meal is my way of telling my family I love and appreciate them. It is not as easy to do as it once was. I have to begin cooking by 230 or 3 – or else I become too anxious and I become paralyzed. That’s when we go out for dinner. I am so glad my family and friends are flexible – they understand my limitations and know I’m trying my best.
I fight with myself to “do”. And I mostly win – I “do” things. I sometimes go for lunch with friends – as long as I don’t have anything else on the agenda for that day. Again, two or three things a day is all I can handle. I am thankful that people have not forgotten me.
I hosted a couple retirement parties for friends – that was important to me. I organized the meals for weeks in advance – down to the timing of the cooking. I socialized, I laughed, I enjoyed myself. Then – I was in bed for a week afterwards. There was a price to pay at the end of the day – but it was worth every penny! I am thankful for wonderful friends and colleagues.
I shut down, typically, after dinner. I watch television. I am sometimes in bed by 7. I can’t sleep until I’ve had my pills. I’m too tired to read, so I play Candy Crush or I push myself to watch the news. I used to follow the news religiously. I push myself to be normal should we have guests for dinner. But, we really don’t entertain as much as we used to. I don’t have the ability to do so. I am so very thankful to have those pills – even though they scare the crap out of me. I wonder when they will impact my digestive system, kidneys, liver, or lungs to create new issues? But – I thank God these pills exist. Or I wouldn’t be alive.
Generally, my memory sucks. I have to write everything down. Age-related? Chemo-related? I don’t know. I am grateful to have the paper and pen.
I cannot multi-task. Not at all. My kitchen preparation is slow and steady. It takes me three times as long as it used to. More than three people in a room terrifies me. I shut down and become a listener. I placate myself to believe listening is the best thing I can do. I am grateful to have people who are patient with me and don’t expect me to be the life of the party. They know I will do as much as I can and leave when I need to leave for a quiet place. Thank-you for that.
My good-byes are that. I live with stage 4 cancer. I fear that I may never see people again – once they’ve left. That is a reality. I watched cancer ravish a friend’s body in two months. It’s hard to not think of that. I am thankful that my cancer is slower – I think I am thankful for that. Being BRCA 2 positive means that I will always have cancer. Remission isn’t really a remission – it is an “on hold” kind of situation. If I stop taking my Lynparza, the cancer springs to life. I focus on living. I must. I do not like the alternative.
If I have an hour of exercise per day – I remember that.
If I have an hour of happiness per day – I focus on that.
If I have no pain for an hour a day – I focus on that.
If I make dinner – but do nothing else all day – I rejoice in my efforts.
I live for my hours – I focus on my hours – I remember my hours. In the context of living three years longer than anyone expected… those hours are the ones that count. Those hours are the ones worth talking about. They are the ones that are my “life”.
And those hours are the ones I will speak of to my doctors, my disability coordinators, to my readers, my friends, and most of all, to my family.
Am I telling the truth when I say I am fantastic? It is all about interpretation. It is all about context.
I choose to tell my story in “hours”.