Inside my dark mind 

To look at me, I look like a regular mom. If you passed me on the street, with my short, curly hair you wouldn’t be surprised to know that I have three young kids and a full-time job. I have a “mom haircut” (growing in from when I lost it after high-dose chemo ONE YEAR AGO) and, most days I’m sure, the dark(ish) circles under my eyes that would lead a passerby to assume they knew my story.

My story though is this. 18 months ago I was diagnosed with an incurable type of cancer called Multiple Myeloma. Never heard of it? Neither had I. But these two words that I never before knew existed have changed my life. They hang over my head daily and literally not a single day goes by that they don’t haunt me in some way. 

On the surface I keep it together. I get up early every day with our new puppy, go through the usual, chaotic routine of getting myself, my husband and three little ones out the door to start our days. Breakfasts get made, lunches packed, backpacks checked. I head off to work to a job I (mostly) love at a company I (mostly) love (hey, nothing is perfect…). 
But what no one can see are the thoughts running through my mind. That I think about having cancer ALL. THE. TIME. When a doctor walks into your room seven days after you went into the hospital with an eye infection and tells you have cancer and that it’s “incurable but treatable” it’s a phrase that’s hard to shake. He told me that years ago this would have been a death sentence but now Myeloma patients live 10-15 years or more after their diagnosis. I know his intention was to comfort me but I feel like I now have a big countdown clock over my head. 10-15 years may sound like a gift to many cancer patients but to the then-42-year-old me, it sounded like the death sentence I’m confident he was trying to assure me it wasn’t. 

Since then I can’t go a single day without thinking about the future and imagining what happens if I’m not here for it. I don’t say that to be depressing or upset anyone…it’s just my new reality. Even now, on vacation, I think about it …it feels like maybe even more. Each memory created feels like another deposit into the memory bank for our family.  

When you see me and think you see an average mom, what you don’t see is what’s lurking beneath the surface. That my brain is constantly racing. 

You don’t know that when I pass pictures in our house I wonder if that particular photo will be used when they pull together a picture board to remember me one day.

You don’t know that when I set up passwords now I always use my husband’s usual password so he won’t have to guess what it is if I’m not here to tell it to him.

You don’t know that whenever I pass an old, adorable couple I wonder if my husband and I will get to be that couple. Will I get to meet my grandchildren? 

You don’t know that every time I read an article about ANOTHER celebrity succumbing to cancer, I rapidly scan the article to see if they had what I have. 

You don’t know that I am constantly adding 10-15 to my kids’ ages and wonder what age that will make them if I’m gone.

You don’t know that there isn’t a single day that goes by that I don’t worry that my time will be cut short and that I won’t see major milestones in their lives. Proms, graduations, weddings. But even more importantly, everyday things too. That as exhausting as bedtime can be with three young kids, that I still worry about how many of these snuggles I have ahead of me.

Here’s the funny thing. I’m healthy and in remission. I have responded incredibly well to treatment and suffer from very few side effects. For the most part, I look the part. I look like a healthy (albeit somewhat tired), full-time working mom and wife. 

I belong to some Facebook groups for people with Myeloma. And two recent deaths – of strangers – have really shaken me up. One was a dad around my age with two little girls. Once I realized the end was close for him, I found myself stalking his wife’s FB page and cried when I found out he had died. And the Myeloma community was rocked when a longtime advocate died on his 60th birthday. Aside front the fact that any death from a disease you have is upsetting, he was in REMISSION. How could that happen??   Could that happen to me? Could a seemingly small cold result in disease complications that are potentially fatal? 

I have every reason to believe that I will be here for a long, LONG time. I am doing well and cancer innovations are coming fast and furiously. Just last year there were three new Myeloma drugs released.  That said, I just wish I could shut my brain down. Wave some magic wand that takes all the bad thoughts away. I wonder sometimes if this gets better over time. If the diagnosis is still somewhat new to me and that it won’t always be like this. If I won’t always be waiting for the other shoe drop.

Most of the time I try to turn my thoughts into a positive. I try to take that “you only live once” attitude and challenge or allow myself to do things I might not have otherwise done. But some days my mind goes to dark places. 

If you ever see me – or someone in my situation – looking preoccupied or distracted, give us the benefit of the doubt. You never know what’s on our minds. Generally speaking I have tried to have a positive attitude since that fateful day. But every once and a while dark thoughts creep in and I try to sweep them away, sometimes more quickly and more successfully than others. During those times I grab a kid for a big snuggle and shake the doom and gloom thinking from my head. And it usually works. 

I saw this quote and it made me smile and reminded me there is ALWAYS another way to look at things. 

 
   

#gameon

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10 thoughts on “Inside my dark mind 

  1. I enjoyed your blog. I too think of these things. I was diagnosed at 52 and even though my kids were older none were married yet and no grandkids. I remember arguing with my Lord that I could see my kids married and grandkids. Well that came fast and furious. It is great that they have treatments for us keeping us going. I was diagnosed in October 2008. It has been over 7 years. They told me back then 3 and possibly more years. Now with all the new treatments its 10-14 or longer. Enjoy your life and your children. Try not to let you get this down even though it is hard. Keep happy thoughts in your mind as much as you can.

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  2. Hi there, I can really relate to your experience. My husband was diagnosed with MM in 2005 and that ‘treatable but not curable’ tag that comes with the diagnosis has always been there to remind us of the uncertainty that comes along with this disease. As you have noted, the discovery of new treatments are happening every year and have contributed to extending Peter’s life.
    I’m sure you know you are not alone in feeling like you have this whole secret life inside your head, but it’s good to know that other’s understand and that we walk this road together.

    Liked by 1 person

  3. I, too, have been greatly saddened by Pat K’s death — he was such a positive guy and so wiling to do whatever it takes to help someone else. My husband was told he had two to three years to live when he was diagnosed with MM — that was nearly 24 years ago . We hope to be the old couple you see walking down the street one day. As Pat would say, “Feel good and keep smiling”. At least try! And it’s okay to have days when you don’t want to smile — been there!

    Liked by 1 person

  4. Jen: I just found your blog and this one really hit home. My 2nd transplant was Feb 25, 2015 and since treatment ended (I’m not on maintenance), I can’t shut the brain off. I use Medical Marijuana (I’m in NJ), or sleeping pills to get to sleep most nights after struggling with insomnia for months. I know I’m fortunate but my family lives into their 90s unless they are hit by a truck. With the tandem, I was told I have 70% chance of a 5 year remission. After that, I’m going for whatever else they got. That being said still doesn’t shut up the dark thoughts. Thanks Jen.

    Liked by 1 person

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