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2 years of hell, the beginning.

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Okay, so, this blog will be about my recent journey battling Cancer but I want to do a bit of back story for how me and my wives lives were before it went to complete shit.

First, we will start with my wife. She's currently 34 years old and has been dealing with Crohns since she was 18 years old. She's had a total of 5 Crohns related surgeries and for the last 10 or so years, shes been dealing with Fistulas. For those that don't know. a Fistula, from the way I was explained, is you have an abnormal pathway that could go from colon to intestine, or intestine to intestine, and some other inbetweens. My wife has what are called Subcutaneous fistulas. Which means, that her intestines basically drain out of holes that are located on her lower left stomach. She has to wear bandages to help keep the drainage in check. Basically, anything from stomach acid, to food, drinks, to other sort of gross things. I'm explaining all this because 2 years ago, Feb of 2016, her GI specialist confronted her about having some of her bowel removed and informed us at how much this would improve her quality of life. I believe they wanted to remove 12 inches of intestinal track.

We decided to go through with it and we met her Surgeon about two weeks before her scheduled surgery. He was a very good Doctor, answered all our questions and put us completely at ease. He kept telling us at how this Surgery would 100% fix her fistula problem and the chances of her getting them back are "Astronomical".

Now, its the middle of Feb, her OR date, I drive her to the hospital, I speak with her surgeon some more and again, he does a great job at calming both of us down. He even tells me that he will call me personally after the surgery to inform me of how it went. After she went into the OR(Operating Room) I was a fucking mess. I couldn't sit still, I couldn't focus on anything. This is where one of the biggest changes in my life happened. Before my wife, it was always me in the hospital, it was always me getting the surgeries. When you're in the middle of it, you generally don't think about much. Now, being outside, helpless, useless, all I wanted to do was harass them every 2 minutes with updates on how the surgery is going. I was scared. I have never been that powerless in my whole life. Not wanting to become that kind asshole husband, I chose to leave the hospital, go home, and play with my dog for a few hours. Which was the perfect move for me to do.

After about 4-5 hours, her surgeon does call me and tells me that it was a complete success. I rush back to the hospital. She's already in a recovery room and she's sound asleep. I pull up a chair beside her bed and just wait.

A little fun fact about surgeries. Depending on the kind, you'll get something called a "PCA Pump", which is a button you can push after X number of minutes and get a dose of pain killers. Its great for a whole host of reasons. The PCA Pump(Pain button from now on) is what helps people recover faster after major surgeries. You rely less on a Nurse or Doctor to give you scheduled doses, and its easier to wean yourself off of.

So, two days after her MAJOR surgery, her surgeon comes in and just takes the pump away. No weaning her off, no notice, nothing. Now, that action is very dangerous. Due to the reason she was using it, she was using it as often as she can, otherwise she couldn't stand up without crying. She did just have her stomach cut open and was gutted. Thanks to her surgeon doing that, she went through narcotic withdrawals. Which, if you've ever gone through them. Are not fun. So after cutting her off cold turkey, they thought the best course of action for her pain, would be T3s. If you're unfamiliar with these. They are Tylenol with some Codine. For the kind of surgery she had, that was basically like 1 stick of gum to fix a flat tire. Not only that, they also had her on full meals. Again, another really bad and dumb move. Her intestines had just had 12 inches removed from them and then had to be sown back together. In order to heal probably. Nothing should be going through her intestines for as long as possible.

Now, I'm watching all this happen but I am terrified of saying anything for fear that they'll treat her worse, kick me out, or fear of me screaming at them because, once they took away her pain pump and tried making her eat solid foods. She looked horrible. We are now, 3-4 days out from her Surgery and then they started talking about her taking her home, within like, the next couple days. I'm still perplexed as to how they could have ever thought she was ready to go home. She was barely moving out of bed, she was losing weight, her pain was only getting worse. If I remember right, we managed to talk them into her staying for...I want to say.....2 weeks. Still not enough time, but whatever.

I'll try to go quick with the next bit of all of this.

She did recovery pretty decently over the next few months but a problem arose. You see, when you're sick, all the fucking time, like me and my wife are. You get to know your body very well, and the signs your body makes. Well, my wife was starting to notice something wrong. She called up her surgeon, who before, gave us loads of support and mental comfort. She informed him that she felt something was wrong where he did the surgery. He brushed her off, just kept saying "Its your nerves". This goes on for about a month. My wife is getting sicker and sicker and the surgeon is refusing to do anything. Thankfully, my wife said "Fuck that Doctor" and called her normal specialist. He ordered some tests for her and within a week or two we had answers.

Despite her chances of getting fistulas again were "ASTRONOMICAL", she got them back, and 2 more to boot. Neither of us were happy and we never spoke to her surgeon again after that.

That was the span of about 6 months. Over the next year things got alot worse before they got better. One huge difference between my wife and me when it comes to staying in the hospital. I can stay in a hospital, alone, for months on end and nothing will bother me. My wife however, can't. She just needed a small bit of normalcy during that time. So, to help with that, every day, from 5pm to about 1030pm, I would take her on a day pass, home, just to watch TV. Just to feel normal. This went on for about 2 weeks. One day, while I'm at work, my wife is calling me. She knows I do not touch my phone at work, so for her to call me, meant it was something serious.

What had happened is the evening nurses)the 4pm to 12am Nurses) were spreading lies about my wife on when we were returning from our day passes. See, we had to be back at NO LATER than 1030 Pm because she had a very important IV antibiotic due at the time. The Nurses will filling out reports saying that we were not getting back til 12:30 or later, thus screwing up all the nurses and their schedules. Well, what had happened while I was at work was some head of something Doctor came into her room and gave her massive shit about coming back so late and how it was disrespectful to the nurses, blah blah blah. After she called me and told me what happened, I informed my bosses that I needed to leave and they were fine with it(I have very cool and understanding bosses). I rush to the hospital, I'm in protective Husband mode. I get there and demand to speak to whatever Doctor yelled at my wife.

It was discovered fairly easily and quickly that the nurses were lying because in order to give out medications, you have to sign into a device called a "PIXIS" that requires a thumbprint. And it shows the exact times of when the meds were taken out. Which showed 1045 at the extreme latest. The asshole doctor came back to my wife and said "Well, the past is in the past, going forward, I would like you to sign out when you leave and sign in when you return". I was not having that. We didn't do that to begin with. We didn't make up the lies. That shit was not happening. I informed him as such and told him to leave. After that, the nurses were still making little lies here and there about my wife but nothing that some Doctor came to yell at her about. That hospital stay finished after 2-3 weeks.

Things were going very rough for some time after that. She lost a scary amount of weight. My wife is like 5'4, petite frame, she went from 115, to 94 pounds. She couldn't eat without it instantly draining from her fistulas. Her life was a living hell. She was put on this new Crohns med called "Entyvio" which was supposed to help her. If anything, it made her worse. Anytime she had an Xray, MRI, or CT, the nurse or technician for that test would comment on how close to death she looks and how something needs to be done. We were doing the best we can. We were at the mercy of her Doctors. They didn't want to or couldn't do anything until we had ruled out that Entyvio was useless, which takes upwards of 6-8 months. Now, up to this point, my wife was still working 12 hour shifts as a registered Nurse. We are both a bit stubborn and stupid and don't want to admit when we're sick.

Finally, after that time, her doctor admitted her to the hospital. This is were things changed for the better. She got switched to a medication called "Humiera" which you've probably seen commercials for. She was also put on something that I had no idea was even a thing. Its called "TPN". Now, for those who don't know what that is. Its basically an IV bag, about 2 litres, full of, basically, all her nutrients, vitamins, fats, carbs, everything, and its all done through her PICC(Which is an IV that goes from your upper Arm, all the way into your heart). This is perfect for her. She can finally let her bowels heal and gain weight. She spent a month in the hospital on the TPN(You have to start out being on it 24 hours a day, then they can lower it all the way down to 10 hours a day). During that mouth, I was required to learn how to do PICC and bandage changes, because, I basically needed to be her at home Nurse. She was too sick to do any of this herself.

Alot of the challenge over the last 18 months was that I had to be the care giver. I still worked, I would come home, care for her, care for our dog, cook, clean, and try to take care of my own health issues.

Its now June of 2018, shes gained weight. Shes doing amazing. She's still on the TPN(Even now) and its the absolute best for her. We both riding high. Things are finally calming down for us, health wise.

To celebrate being healthy, we went to our local county fair. One problem I always have with our local fair is that I am an idiot and I always end up getting heat stroke from being in the sun too long. So, at the end of our awesome day, I didn't think much of it when I started to puke. I do it every year. Like I said, I am an idiot. Well, the vomiting didn't stop. This went on for about 9 days. This is were Cancer comes into the story but I'll save that for the next post.

Not sure if you can comment on these, if not, I'd love if people sent me private messages with feed back. I know the story of my wife seems a bit unconnected now, but it'll make sense in the next post. Let me know if you like it, or would like things better explained, less explained, or if you just don't care and want me to stop. I welcome anyone for this.


  1. Mayareira -
    Mayareira's Avatar
    Subscribed. Well written post, Myrrh.
  2. Kalmado -
    Kalmado's Avatar
    What you two go thru in a week is probably more than most go thru in a life. Way to keep each other strong.