My Sexy Super Hero Mutant Husband

Updated: Aug 14, 2019


My phone rings.


“Honey, yeah I got a call from one of the docs. They said that I have something called Polycythemia Vera.”


He calls back.


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




I took this picture of him on Christmas Day after he spent his energy playing the role of Papa Claus.

Early Saturday mornings in our household usually meant that 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 the bed all night my husband would now be in the location where we would pretty much find him after the game. Where we would find him 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’m the one who gave birth to five kids. I’m the one home trying to manage through his year-plus long IA’s and Deployments…random sea trials. Me, me, I deserve to be tired me!


Couldn’t he at least throw his “tired” to the side and sit and watch one of their games? I know he does a lot at work, helping to defend the country and all, making sure that we are taken care of, but can’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. Hoping that if he saw that it had nothing to do with the "nagging wife" then his paternal side wouldn’t disappoint. But 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.


See! Don't I look like I would win the marital tired contest??

I always had hope though. Hope that the odds of him coming would eventually be greater than him not. I had hope because I knew that 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 gives his all to his job in the military. Maybe that was it. In my mind, the truth behind him being married to the military, and that I was his mistress was our reality. Retirement would be when I could finally see a different side. A more relaxed side. He can’t be the only one giving his all and is tired at the same time.


Don't dwell on the negative.

Outside of being raised with the knowledge that young ladies always wore slips and stockings, I was also taught something else that unlike the slip, and stockings stuck with me... 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 go off on the deep end. It kept me from wanting to give into 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 into the frustrations. I would either “calmly” bicker with him about why he needs to be there more. Or I would stay quiet and to myself. The latter is the one that he would quickly pick up as me having an attitude, which of course leads to me being pissed that he thinks he has 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.

The story of how I accidentally became the boy's assistant soccer coach is for another time. But I would like to say that The Man did make it out to one of these games, but I can't truly tell if it was due to the fatigue, or the fact that he was embarrassed that I pretty much just yelled the coaches instructions but in a louder voice to the team, as his reason for only coming once...I was good at encouraging the players though :-D!

So 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 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 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. No signs that anything was off less than 12 hours ago, so what on earth?!


“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 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 1.5 months only to be left with even more confusion as to why his BP kept spiking. We would end up going to three different hospitals in the hopes that one of them would have "The Answer". But it was always the same. Even while being put on 7 different medicines, and everything else about him checking out we had no answers to this immediate threat to life that decided to make an appearance. And wouldn't you know it...more issues decided to join in on this guessing game.


We just wanted an answer. The one we got wasn't what we expected...

With three different specialists now involved in this puzzle, and more lab work to get results from, the unknown caused him such discouragement from seeking help that 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 Sexy Super Hero Mutant Husband produces too many red blood cells due to a gene mutation called JAK2. Because of this he has Polycythemia Vera Primary or for short PVP.

My phone rings.


“Honey, yeah I got a call from one of the docs. They said that I have something called Polycythemia Vera.”


He calls back.


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


Getting over my non-admiration for this docs bedside manner in the way my husband received the news, I immediately hang up to do something that I always thought would make me the best detective ever. Google searches. I see the “C” word but maybe it’s just this particular website that says it’s cancer…nope, they all say it is.


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


I research, email specialists and join PV facebook groups to soak in as much as I can about this extremely rare blood cancer, that he got from an extremely rare bone marrow gene mutation called JAK2. There is no cure but it can be managed. And all my life I was paranoid that I would be the one to get something crazy only to hope that I would just have the chance to give it a fair fight.


Oh, but there's more...

The gene mutation wasn't even discovered until '05...

One thing that we learned is that this is not the main reason for his extremely high bp spikes. That is still a mystery. It does, however, explain his night sweats even with the fan right over him, the itching after no matter what type of moisturizer I give him, and of course the extreme fatigue. Those were the only main signs that 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 that we seem to be on.


“Sorry that 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 that 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 that maybe he just didn’t want us. Four years of him saying that he was too tired to come with me to a game. Four years of him just staying on the couch fighting something that he didn't even know he was fighting because it was overlooked. Four years of him dealing with me and my naively, innocent shenanigans...


14 years of life together...of love overpowering misunderstandings that should've driven us apart.

I thank God every day that 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 that 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 so 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 that I am his "El Foolio". But for now, we have each other to help get through this fight. A fight of something so rare that 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 that they say has no cure. A cancer with no cure but can be managed. Trying to manage it is where we are right now.


We received his diagnosis a week before our trip to Disney. We may have been able to only spend a couple of hours at the parks, and we had to have a full day of rest in-between, but all he cared about was that the children had a good time. Superhero Papa Bear :-).

And so for that, I can say that 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 am going to post links with information regarding Polycythemia Vera below for those who are interested in learning more, but for now, I have something that 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 that 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 that 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) that 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 that 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 that one could pinpoint or in our case, it could be something emotionally, mentally, physically wrong that they don’t even know themselves. Wouldn't you want to know that you have someone to love you through it regardless of what stage you are in with dealing with it?



The Myeloproliferative Neoplasms categorizes a group of three blood disorders: Essential Thrombocythemia (ET), Polycythemia Vera (PV), and Myelofibrosis (MF).

For more information on MPN's and Polycythemia Vera:

https://www.pvreporter.com

https://www.mpnconnect.com

https://www.voicesofmpn.com

https://www.lls.org



Facebook:

https://www.facebook.com/pvreporter/

https://www.facebook.com/groups/395227047729214/


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Remember, above all else...LOVE!
 

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