‘Sorry we dropped the ball and didn’t tell you about this, but we found it in your blood work 4 years ago.’: After years of fatigue, husband is finally diagnosed with rare blood cancer

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“Early Saturday mornings in our household usually meant a recurring dialogue would take place:

‘Papa, are you coming to my game today?’

‘No, I’m going to stay here and rest.’

And after lying upstairs in bed all night, my husband would be in the location where we would pretty much find him after the game. We would find him there most of the weekend, laying on the couch in the front room. (Or as we call it in our house, the Red Room because it’s painted red.)

Automatically, my heart and mind went into mom-mode as I prepared to remind the children during the car ride to the soccer or basketball game that Papa was just ‘really tired.’ Truthfully, I saw it as him choosing to give in to the fairy dust of the Sandman. I mean, with one ending in miscarriage, I was the one who gave birth to five kids. I was the one home trying to manage through his year-long IA’s, deployments, and random sea trials. I deserved to be tired!

Couldn’t he at least throw his ‘tired’ to the side and sit and watch one of their games? I knew he did a lot at work, helping to defend the country and all, making sure we were taken care of, but couldn’t he push his tired to the side for at least two hours to be there and cheer them on?

I still had hope.

It got to the point where I would tell them to ask him when I wasn’t around. I hoped if he saw it had nothing to do with the ‘nagging wife,’ then his paternal side wouldn’t disappoint. I couldn’t help it. After hearing the familiar dialogue, my mom-heart wouldn’t allow me to walk out of the door without questioning him one more time.

I always had hope though, hope the odds of him coming would eventually be greater than him not. I had hope because I knew he loves his children. Maybe he needed to change his sleeping habits. Maybe he was depressed.

He also had hope, as the night before he would talk about being there. So what was the problem?

This man gave his all to his job in the military. Maybe that was it. Maybe when he retired, I would finally see a different side, a more relaxed side. He wasn’t the only one giving his all. He wasn’t the only one who is tired at the same time.

Outside of being raised with the knowledge young ladies always wore slips and stockings, I was also taught something else… not to dwell on the negative. ‘Whatsoever is true, lovely, of good report…’ The Bible verse planted on my heart since my youth kept me from really going off on the deep end. It kept me from wanting to give in to what I like to call the ‘girlfriend voice’ in my head that would tell me to tell him to ‘straighten up or that’s it!’

I was never at peace with ‘that’s it.’ But sometimes I would give in to the frustrations. I would either ‘calmly’ bicker with him about why he needed to be there more. Or I would stay quiet and to myself. The latter is the one he would quickly pick up as me having an attitude, which of course led to me being pissed he thought he had a right to be mad at my attitude!

He just needed to learn how to de-stress properly after work. He just needed to sleep better. He just needed to make more of an effort.

Fine. Whatever.

I continued our new Saturday routine, showing up to family invites, taking the kids to the park, the movies — without him. He continued his routine of going to work, deploying, taking care of us, showing off Master Chef-level cooking skills for family gatherings, and asking how their games went. Some days he did find the strength to come, but you can just see it all in his face. He was just tired.

‘Honey, I need you to take me to the ER.’

I looked at my husband, who absolutely hates stepping foot inside of a hospital. A surprised and concerned look appeared on my face, as my expressions talk just as much as my mouth does. He was just sitting on the couch in so much pain. Something was crazy off. His eyes remained closed as he talked. ‘My arms feel like they are underwater, and I’m in pain.’

Just the night before, we sat at the dining room table eating our ’14th anniversary from the day we met’ meal. There were no signs that anything was off less than 12 hours ago. What on earth was happening?

‘We need to admit him.’

His blood pressure was dangerously high and the meds they gave him in the ER were not helping at all. I’ve seen this man take out IV’s before as soon as he was wheeled back into the recovery room from surgery just to get out of the hospital. But this time… this time all he gave us was a look of pain in his eyes.

Something was wrong.

That hospital stay, which was 8 months ago, would lead us into the unknown. It started off with rushing him to the ER once or twice a week for about 1 and a half months, only to be left with even more confusion as to why his blood pressure kept spiking. We would end up going to three different hospitals in the hopes one of them would have The Answer. But it was always the same. Even while being put on seven different medicines and everything else checking out, we had no answers to this immediate threat that decided to make an appearance. And wouldn’t you know it, more issues decided to join in on this guessing game.

With three different specialists now involved in this puzzle and more lab work to get results from, the unknown caused him such discouragement. He began to not let me know when he felt it spike. He would wait for it to pass, hoping that it would pass. Alone, my knuckleheaded, stubborn, sexy, sailor man did that. While at work. While making sure we were still taken care of. While resting on the couch.

My phone rang.

‘Honey, I got a call from one of the doctors. They said I have something called Polycythemia Vera.’

He called back.

‘I just looked it up and apparently it’s a type of cancer.’

I immediately hung up to do something I always thought would make me the best detective ever: Google searches. I saw the ‘C’ word but maybe it was just this particular website that said it’s cancer.

Nope, they all said it was.

But apparently there are different types of it, so maybe he really doesn’t have the type they actually consider cancer. ‘No babe, I do have the primary. It’s Polycythemia Vera Primary.’

I researched, emailed specialists, and joined Facebook groups to soak in as much as I could about this extremely rare blood cancer he got from an extremely rare bone marrow gene mutation called JAK2. There is no cure, but it can be managed. All my life I was paranoid I would be the one to get something crazy, only to hope I would just have the chance to give it a fair fight.

Oh, but there’s more.

One thing we learned is this is not the main reason for his extremely high blood pressure spikes. That is still a mystery. It does, however, explain his night sweats (even with the fan right over him), the itching (no matter what type of moisturizer I gave him), and of course, the extreme fatigue. Those were the only main signs we had of this disease. For now, the hematologist has been added to our list of specialists that have joined in on this guessing game carousel we seem to be on.

‘Sorry we dropped the ball and didn’t tell you about this when we found it in your blood work four years ago. But the good thing is that…’

Read that last paragraph again if you didn’t get it the first time. My husband has been in the military for 18 years. His cancer is so rare, when it showed up four years ago, they didn’t catch it. Four years ago.

Four Flipping Years.

Four years’ worth of nagging and being disappointed in him for not being able to do more. Four years of me thinking maybe he just didn’t want us. Four years of him saying he was too tired to come with me to a game. Four years of him just staying on the couch, fighting something he didn’t even know he was fighting. Four years of him dealing with me and my naively, innocent shenanigans.

I thank God every day I didn’t give in to that little voice that wanted to rise and strengthen me with the courage to live this life on my own without him. Every time it would try, it would be overpowered with patience, hope, and love. Not to mention he has never stopped being my spicy, sexy man who would make my uterus flutter even with my tubes tied. My love for him overpowered all of my frustrations and doubt. Was I perfect at showing it? Far from it. But I wanted to give it. I wanted to love him and that kept me on the path of constantly striving for it.

How he decided to put up with me is something I may never know, outside of him telling me I am his ‘El Foolio.’ For now, we have each other to help get through this fight. A fight of something so rare, there isn’t even a specialist for it in the state of Virginia. Only 100,000 people in the United States have this. They say that it is found in people aged 60 and older. We’ve found people in their 20’s who were diagnosed. The Man himself is in his 40’s. Some have had it for years, while others in the group are just now finding out that they have it.

Regardless, more research needs to be done for a type of cancer they say has no cure. There is no cure but it can be managed. Trying to manage it is where we are right now.

For that, I can say I am married to a Sexy-Superhero-Mutant-Husband, whose super-power is making everything seem fine on the outside and getting things done while fighting a battle on the inside.

I have something I would like for you to ponder.

Can you love them through it? Can you be patient with them? Show them kindness? Can you remain calm? Can you not make it about you?

Who am I talking about? I’m talking about the person (people) in your life who challenges your ability to love properly. I don’t mean someone who is abusing you and causing you not to be able to think with a sound mind. I’m talking about someone you are frustrated with, and you are allowing that frustration to turn into anger, which in turn creates chaos in your world.

That person(s) you thought of… can you now go back and answer those questions with them in mind?

This is just my story of how I learned life is too short to waste it on letting the negative control you. Quite truthfully, we all are battling something, whether we want to be honest with ourselves or not. It could be a deep issue one could pinpoint or in our case, it could be something emotionally, mentally, physically wrong they don’t even know themselves. Wouldn’t you want to know you have someone to love you through it, regardless of what stage you are in with dealing with it?”

This story was submitted to Love What Matters by Joy Naik. Visit her website here. Do you have a similar experience? We’d like to hear your important journey. Submit your own story here. Be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.

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