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.
And sometimes I can find some silver linings amid my cancer battle. This past weekend was an example of one. We participated in our local Leukemia & Lymphoma Society’s Light the Night walk. If you’ve never been, this event is truly amazing. And we were so grateful to have so many friends, both new and old, join us and walk by our side. It’s during times like those that I feel overwhelming gratitude and appreciation for the good my cancer has shown us.
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information about an incurable cancer you’ve been diagnosed with….AND when the data about your condition is wildly outdated.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 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 this past week it’s 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 is the story of a family in the UK where a young husband and father of four has Myeloma. He has not responded well to his treatment and it’s been a constant struggle for them. Last week they didn’t have enough food to feed their entire family of six and had to decide who would eat. Like many parents, it was their children who got the food – although what cancer patient should have to make this decision? One of their daughters celebrated a birthday recently and they didn’t have enough to buy her the presents they desperately wanted to give to her.
This reminds me how lucky we 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 is the story of a Myeloma patient in South Africa who was trying to raise money to get to the US for a last-ditch treatment (approximately $40,000 USD) because she does not have access to the best treatments or a Myeloma specialist in her country. She has now learned she is eligible for the revolutionary CAR-T cell therapy – but through a trial in China. All of this because the right medicines and specialist either aren’t available – or are unaffordable – in her home country.
Last week I had an appointment with my amazing myeloma specialist, Dr. Roger Strair. It was an incredibly busy day at the cancer center and my husband and I waited 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 is the story of a woman about my age, whom I never had the chance to meet but now consider a friend. She was diagnosed shortly after me, and in some ways, was diagnosed because of me. She is a friend of my sister’s friend. A few weeks after my own Myeloma diagnosis, she was suffering from symptoms that sounded eerily like mine. My sister gently suggested they consider testing her for Myeloma – and it was.
While she and I may be on this journey with the same timing, we have had very different experiences. She has faced one hit after another though she has ALWAYS had the MOST positive attitude. She had two stem cell transplants, has been on many treatment regimens, has lost her hair multiple times and has been in an extraordinary amount of pain, most of the time due to the various tumors that have developed – all in the same three years as me. Her Myeloma is very aggressive and the cancer is spreading with an intense fury. She now has a tumor in her eye, which has robbed her of her vision, and additional tumors that have developed on her head. She will be entering hospice now where she will spend her final days.
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.
So, I can’t help thinking – why her and not me? Why I am blessed enough to have responded so well to the very same medicines that didn’t even scratch the surface for her? 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. It can be depressing to see posts about people who have lost their fight and this can put me in a funk for days, especially the time when another mom, an outspoken advocate and also in remission, died from a bout with pneumonia – something I can get two or three times a year.
But there are also many people who provide hope and inspiration. A mom, just slightly older than me, with a child, just slightly older than mine. She was diagnosed about five years ago and continues to fight her ass off. This year she will celebrate her 50th birthday and she is using that milestone to create awareness of and raise funds for Myeloma. She is insanely positive despite the pain she is in daily. She is a reminder that we all have the option to fight with dignity, kindness and humor. There are many who are fighting to make sure that 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 impacts 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 that 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 with it. 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 who lose their battle with cancer are positive – and they still die. There is a lot to be said for a kick-ass medical team, incredible people around you and plain old luck.
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 that the things so many of us take for granted, someone else is praying for.
Until next time, #gameon