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Why I Try to Stay Positive Through My Multiple Myeloma

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Living with cancer is hard to describe. In the beginning, it was all I could think about – there was no way to escape it, whether it was how I was physically feeling or getting
emotional about the possibility of leaving my husband and kids forever. I wouldn’t
have believed it if someone told me back then, but that does actually get better. I used to think about having cancer every hour of every day – now it’s there, in the background but no longer the permanent fixture in my mind it once was.

These days I (mostly) manage the side effects from my treatment and tend to have more good days than bad, both physically and mentally. This makes it easier for me to think beyond my next set of test results.

It probably goes without saying though that there are days when having cancer really, really sucks. When I feel really crappy from my medicine, when I can’t shake a fear of dying far too early or when I hear heartbreaking news about how others with my same cancer are struggling more than they ever should be.

If you’re like me, when you first receive a cancer diagnosis, you want to devour as much information as possible. Google can be great for many things (inspiring quotes or funny memes) and sometimes a little scary when you type in like five letters and it knows exactly what you’re looking for (how do they do that?).

But it can also be a dangerous place when you’re craving information about an incurable cancer you’ve been diagnosed with… and when the data about your condition is wildly outdated.

As a result, I have joined several online support groups for patients with my type of cancer (multiple myeloma). I don’t generally post too often in these groups; I’m more of a silent post stalker. But they can be a good resource for information on new advances in myeloma, as well as how others respond to treatments or how they manage side effects.

As time goes by, you begin to recognize names and follow the stories of others.  Sometimes this can be uplifting. You see how a new medicine may turn things around for someone who seemed to have lost hope. You can educate yourself about how to control your symptoms in a holistic way. And you can be inspired every single day by the strength of those who are in your same (cancer) shoes.

The downside, however, is that… you begin to recognize the names and follow the stories of others. You become invested in how they are doing and, when things aren’t going well, it can be terrifying.

And recently it caught up with me. The all-too-many posts from people who are having a very different experience than I am having for many, many reasons. This reinforces for me, time and again, how fortunate I am and how important it is to keep things in perspective.

There are the stories of families struggling to afford treatment and food. People who do not have money for the medicine they need to literally keep them alive. This reminds me how lucky my family and I are to have a pantry and refrigerator full of food every single day. How appreciative I am that money isn’t a major factor in our everyday lives, let alone in my fight against this cancer. That I have never had to make a decision about my health based on whether or not I could afford doctors, medicine… let alone food.

There are stories of patients around the world who have to consider traveling to another country because the right medicines and specialist either aren’t available – or are unaffordable – in their own countries.

At a recent appointment with my own myeloma specialist I had to wait for over an hour. When the doctor came in, he apologized profusely, explaining there had been an emergency with another patient. Now I am not generally what one would describe as a patient person. However, that day I felt so much gratitude because I know I am being cared for by a specialist and medical team who are top notch. There are so many patients who would give just about anything to have access to an oncologist who specializes in blood cancers, let alone myeloma specifically. Waiting was the least of my concerns.   

And then there are the stories that seem to parallel my own. People who are about my age, who were diagnosed around the same time as me or may even follow the same treatment plan I do. And while these factors may be the same, many of us have had very different experiences. This reminds me how lucky I am to have had such a positive response to my treatments. Compared to so many others, I have manageable side effects, manageable pain and my prognosis has remained optimistic. It reminds me I absolutely must take my own health very seriously and not take anything for granted. I must show appreciation for this gift of time and health – and make every day count. 

There are some days I ask myself if I should leave these groups. Sometimes it can be depressing to see posts about people who have died and this can put me in a funk for days. But there are also many people who provide hope and inspiration. There are many people who use their illness to raise awareness of this disease. Those who remain positive despite their pain and sometimes dismal prognoses. There are many who are fighting to make sure myeloma gets the attention it needs to fund research and find a cure.

These are the reasons I stick around.

Having cancer sucks. It changes your life in more ways than you can ever imagine. I see everything now through cancer-colored glasses. It affects how I look at my marriage and my children. It affects when and how often I leave my house for fear of being around germs. It has taught me to say yes to the things I want to do – and no to those things that will not bring me happiness.

It has given me a perspective I think little else would have. It has made me an accidental spokesperson and fundraiser for a disease I didn’t even know existed before my diagnosis. It has changed the path of my life in so many ways.

During our lives we will each likely have some struggle, some burden that will shift everything — that may split our lives into “before” and “after.” It may be divorce, the loss of a child or parent, a health crisis, the loss of a job or a home — something that will cause you to see things differently, will alter how you look at the world.

We each have the choice about whether or not we find the positive in those situations. It’s so much easier to get bitter and angry or to blame the world for the bad things that happen to you. It takes so much more effort, strength and determination to find some sliver of good. And make no mistake, some days that will feel nearly impossible to do.

I’m not suggesting that being positive will save you. There are many positive people who have really crappy things happen to them. And while I believe a positive attitude has helped me during this time, it’s not the only thing. So many people are positive – and they still die from cancer. There is a lot to be said for a kickass medical team, incredible people around you.

But I believe that – for me – being negative would only make this worse.  I was told at diagnosis that myeloma is “incurable but highly treatable.” I personally have to focus on the “highly treatable” versus “incurable;” it makes a big difference in how I deal with this.

Every day we hear news that reinforces the world is a scary, scary place. Whether it’s a natural disaster, like a hurricane, or a man-made disaster, like a mass shooting, there is just so much heartache.

But we have the choice about how we react and what we learn. How we look at the world and find a way to make a positive impact. How to use these challenges to find perspective.

One small thing we can each do differently? Let’s try and stop complaining all. the. time. A little bit is human, and, trust me, I do my fair share. But this constant grumbling – whether it is in person or online – is a choice. There is always something to be positive about and someone who has it better – and worse – than you.

Never forget the things so many of us take for granted, someone else is praying for.

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Photo by Eli DeFaria on Unsplash

Originally published: February 15, 2018
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