Gather together all of your ingredients and whip up something delicious just in time for the holidays.
Tori Tomalia is a two-time cancer survivor currently living with stage 4 non-small cell lung cancer since May of 2013. Her first cancer experience was childhood osteogenic sarcoma, for which she received chemotherapy and curative surgery, and had been cancer-free for over 20 years prior to the lung cancer diagnosis. Along with cancer, Tori juggles life as a mom of 3 small children, a wife, a theatre artist, writer and lung cancer awareness advocate.
Some of these ingredients may seem hard to find, especially if you are newly diagnosed. But with a little searching (and soul searching), you can create something wonderful to sustain yourself through the hard times.
This support can come in a variety flavors, and many blend well together.
The first cup includes your close circle
First, you will need three heaping cups of support.
: spouse, parents, family, friends, relatives, neighbors, coworkers, religious groups, community groups. These people are all around you, and are the first to jump in. Since too much
support can spoil the recipe, it helps to use a website like Lotsa Helping Hands
, or an organized friend to coordinate your support.
The second cup is your cancer people
. It begins with the medical staff, such as your doctors, nurses and social workers. I have found it enormously helpful to include the support of other people with cancer, because they know what I am going through both emotionally and physically and can serve as emotional and practical guides navigating these waters. Explore online groups and organizations as well as in-person support such as The Cancer Support Community
, a national organization that provides online support as well as local chapters. Remember that there is also support for your caregiver and children, if you have them, in the form of caregiver support groups and child life specialists for young ones.
The third cup is money
. Cancer is expensive, and even if you have good insurance, the co-pays plus the lost work can add up quickly. Consider allowing friends to do a local fundraiser or an online campaign. Many people with advanced cancer also qualify for Social Security Disability
, so speak to your hospital social worker about this.
Remember, support is vital to having this recipe work out, so don't skimp on this ingredient because you are scared or ashamed to ask for help.
Sometimes the courage comes in big chunks, enough to sustain you for weeks. Other times, it is granules that are just enough to keep you going one moment at a time.
Next, throw in two large handfuls of courage.
It is the courage to ask questions of your doctor, the courage to advocate for yourself if you feel that you are not getting the care and response you need. It is the courage to admit that you need help. It is the courage to go for a second opinion. It is the courage to discuss end-of-life issues and wishes. It is the courage to tell those closest to you about what you are facing, your worries, your dreams and your nightmares. It takes courage to admit that you don't feel positive all the time. Admit the fear, speak of the terror, stop being strong. Then, when you are ready, find the courage to keep moving forward.
People vary on the amount of knowledge they like in here, but this ingredient enriches the whole experience.
Melt and stir in a stick of knowledge, so that it spreads evenly throughout the mixture.
When diagnosed with cancer, we are thrown into an entirely new landscape, and knowledge can give back some of the feeling of control that cancer tears away. Knowledge helps you know what expect, how to plan for what could go wrong, what the Plan B will be if/when this treatment stops working. With knowledge you can learn about clinical trials that may prove promising (even potentially lifesaving
) for your particular case. You can find this knowledge from online cancer communities of others with your disease, from staying abreast of the latest research, from pressing your doctors for more information, and from talking to others professionals in the field.
Without just a touch of this, the flavors can sour.
Throw in a dash of denial.
Sometimes the intensity of a stage 4 diagnosis can be simply overwhelming. I have found that I can't spend all my time focused on my dire prognosis. Sometimes, I just need to forget about it, try to forget that cancer exists, forget this thing living inside of me. So go ahead, splash in some denial – and if you're having one of those
days, pour in the whole bottle. I won't tell.
This final ingredient pulls the flavors together and makes it all palatable.
Finally, cover the whole thing with a generous dusting of hope.
Never underestimate the power of hope. In the darkest times, it can provide a single ray of light that keeps you moving forward. It could be the hope that you make it into a clinical trial, or that this next treatment buys you some more time, or that you will make it to the next birthday, or that you might just be the outlier that blows the statistics out of the water.
Of course, there is no one recipe that works for everyone. These are the things that have helped me navigate the emotional minefield of this disease. What about you? What ingredients do you put in your mix?
Tori Tomalia is many things: a mom, a wife, a theatre artist, a mediocre cook, a Buffy fan, a stinky cheese aficionado. She is also, unfortunately, a repeat visitor to Cancerland. Stay tuned for her continued adventures.