So, let me tell you about my day. I saw my primary care physician today (did I mention just how much I love him) and I broke down and cried. I couldn't hold back the tears any longer. My cancer is spreading, and honestly, there is not much they can do. He handed me two tissues and simply said, "I would cry too if I were in your shoes." Maybe God is using me to be able to save other people's lives. I would hope that my life was not for nothing and these diseases were able to teach doctors how to help others in my situation. I do not want other people feeling like they are alone in their journey.
Now, in order to live with metastatic cancer you need a recipe, yes that's right, a recipe. You cannot make it or survive even a month without this recipe. So here it is:
- First you will need three heaping cups of support. This support can come in a variety of flavors and many blend well together. The first cup includes your close circle: spouse, parents, family, relatives, friends, neighbors, coworkers, religious groups, community groups. These people are all around you. 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. 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. Remember, support is vital to having this recipe work out, so don't skimp on these ingredients because you are too scared or ashamed to ask for help.TThFiFiR
- Next throw in two large handfuls of courage. 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. 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 of the time. Admit the fear, speak of the terror, stop being strong. Then, when you are ready, find the courage to move forward.
- Melt and stir in a stick of knowledge so that it spreads evenly throughout the mixture. People vary on the amount of knowledge they like in here, but this ingredient enriches the whole experience. When diagnosed with cancer, we are thrown into an entirely new landscape, and knowledge can give back some of the control that cancer tears away. Knowledge helps you know what to 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 potentientially 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 other professionals in the field.
- Throw in a dash of denial. Without just a touch of this, the flavors can sour. Sometimes the intensity of a Stage 4 diagnosis can be simply overwhelming. I have found that I cannot spend all of my time focused on my dire prognosis. Sometimes, I just need to forget about it, try to forget that cancer even exists, forge 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 damn bottle. I won't tell.
- Finally, cover the whole thing with a generous dusting of hope. This final ingredient pulls the flavors together and makes it all palatable. Never understimate 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 the next clinical trial, or that this next treatment buys you some time, or that you make it to see your next birthday, or that you might just be the outlier that blows the statistics out of the water.
I walk in the land of the living with the oppressive knowledge of how very close we all are to the land of the dead.
People ask me how I cope, knowing how very uncertain my future is. Learning to cope has been a gradual ongoing process. First, was the shock, a frozen inability to process this new reality. Then there was the grief, the acknowledgement of my lost future all the things I had just assumed I would get to do and see. The plans that I had laid, crumbled beneath my feet. But, I realized I couldn't stay in that mental space. I felt like I was wasting the time I had left here by focusing on my lost path.
So I stopped looking down that road. I started doing what all the self-help gurus tell you. I grabbed onto the old cliché and focused on "living in the moment." It is liberating and bizarre. And I get strange jolts when I remember that most people don't live like this.
I'll look back on this when I'm 80 and I'll laugh about it!
This will make a great story to tell my grandkids!
I avoid thinking about my own future in any concrete terms. I can think in a general sense about the future of the world, how things might be one day. But to think about my family five years from now sends a pang through my heart.
Isn't part of growing up focusing on the future? Be an adult. Plan for tomorrow. Think ahead. Prepare for the rainy day. How are you supposed to do that when you KNOW that your future holds a typhoon? If you focus on the storm, your today will be washed away. Who knows how long any one of us has? In my case, I most likely know what is going to be the cause of my death. Does that make it different?
So I avoid thinking about the future. At least most of the time.
It's a tricky balance. I am a mom, so a big part of my job is preparing my kids for the future. How do I prepare them for a future that may not include me?
The diagnosis of lung cancer carries with it a great deal of blame. There is the sometimes-spoken-usually-thought question that lung cancer patients face: did you smoke? While it is certainly true that some lung cancers are caused by smoking, 10 to 15 percent of people diagnosed have never smoked, and another 40 percent have quit and were living smoke-free. Also keep in mind that the older folks started smoking when it was the norm (seriously, even doctors promoted smoking back then). Sadly, lung cancer kills more people than any other cancer – more than breast, prostate, and colon cancers combined. Despite this, lung cancer research receives a fraction of the federal funding of other cancers. And it boils down to blame.
~~~
Why me? Why did I get cancer?
Well, it must be because you smoked. No?
Well, then it must be caused by previous treatment. No?
Well, then it must be caused by a genetic condition. No?
Well, then it must be caused by lifestyle choices. No?
Well, then it must be caused by second hand smoke. No?
Well, then it must be caused by radon. No?
Well, then it must be caused by pollution. No?
Well, then it must be because you prayed to the wrong god.
Well, then it must be some sort of cosmic joke.
Well, then it must be punishment for mistakes in a past life.
Because it must be YOUR FAULT.
I don’t think people follow this line of thinking to be cruel (most of the time), but rather to distance themselves from the illness. I didn't do X, therefore I could never get Y. I'm safe and can carry on without worry.
Every day we make choices about how we live. Did you choose the salad or the steak? Did you ride your bike or drive? Did you sleep a full eight hours? Did you meditate? Did you exercise?
Of course we should make healthy lifestyle choices. But we are all human, wonderfully beautifully flawed human beings. And sometimes even when you make all the "right" decisions, life has other plans.
~~~
So, why me?
Why me?
. . .
Why does it matter?
Love you all and truly mean it and God loves you too,
Shanna xoxoxo
Official prayer warrior page for my fight against lung cancer: facebook.com/hope4shanna
Official blog Facebook page: https://www.facebook.com/shannabananahealthandfitness
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