Wednesday, October 16, 2013

Iron wins

Warning: this post is long and might seem jumbly. I apologize in advance but thank you if you manage to read to the bottom! 

So, yesterday I went in for the iron treatment. We were trying a different form of iron - one that is supposed to be easier to tolerate. The one they give to people who are usually allergic to iron and it's usually fine.

I went in nervous. Last time I was in the infusion room I was getting iron. And it ended badly. But I was also hopeful. It was supposed to work. We were going to start with a test dose. And then, after an hour, if it went well, I would get the full dose. And maybe not be exhausted for a little bit.

So, we got the test dose. It takes 5 minutes. Then they stop it. And watch me. Not in a creepy-we're-going-to-stand-1-inch-from-you-and-watch-you but the nurses were circling often and keeping an eye on me.

After a few minutes, I looked at my husband and said "my cheek itches." He asked if he should tell the nurses and I said no because one itch isn't an allergic reaction. Yet. I might have had a few more itches. And I thought if I just ignore it, if I just don't itch, it will all go away.

A few minutes later "Is my face red? It feels hot?" No, he said, it wasn't red. So naturally I wondered if it was all just in my head. He asked again if he should get a nurse and I said no, not yet. But I was starting to feel uncomfortable. My face was so hot I would have told you in the moment it was literally a million degrees (obviously though, it wasn't) and the itching was getting worse.

I started looking for a nurse and was just about to tell the husband to go get one, when one came over. "How are you doing?" with a hint of concern in her voice. "Yeah, my face is hot. And I'm itching" At this point my face was red to look at and within minutes I was an itchy mess.

10 minutes after the test dose. I asked my husband to hold my hand so I couldn't scratch. Then I'd tell him to let it go so I could itch. At this point I was getting benedryl and (I think) some steroids in my IV. I told them I had to go to the bathroom, with my flaming red face that I was scratching away at. One nurse commented that feeling like you had to go to the bathroom was common with an iron allergy. Except, I really had to go. So I think I told them about a dozen times I was going to pee my pants if I couldn't go to the bathroom. During all this they are taking my blood pressure, my pulse, my temperature, possibly pushing more medicine. There were 2 or 3 nurses by me - I don't quite remember. All I knew was I was going to pee my pants.

They were done doing what they were doing and told me I could go. I stood up. I went back down. Not so much fall,but me feeling light-headed, the room spinning, and knowing if I didn't sit down I was going to meet the floor pretty quickly. And also, I was going to pee my pants. I was convinced I was going to pee my pants. I'm sure everyone else was thinking about other things. [Side note: my husband said that I actually only said I was going to pee pants a couple times.]

I was rolled to the bathroom though. In a rolly chair. Which totally made sense to me at the time. I don't think they had wheelchairs back there so the rolly chair did the trick.

Anyway, came back, laid down and started shaking. All over. My hands went completely cold and clammy. I couldn't stop shaking. I kept trying but I couldn't. And my face was still on fire. I had a washcloth on it. Then they were checking me for a fever - apparently my temperature was starting to climb. They called it something. I'd swear a million bucks they said "she has Raymond". I also know that's probably not at all what they said either. So then I was given some demerol. And oh, I had to go to the bathroom again. In my mind all of this took place in mere minutes. I know it wasn't, but benadryl makes me a little loopy. And the demerol pretty much sent me into the completely drugged out zone.

But they wheeled me to the bathroom. And when we got back to the chair, I felt exhausted. I just needed to sleep. I was kind of falling asleep when the doctor came to talk to me. I think I mostly remember what we talked about, though I'm not sure at the time my responses to him made any sense. In my defense, I was pretty drugged up. I do remember he told me we wouldn't try any more iron for now. He told me to keep doing what I was doing at home. I also remember I told him I was just tired all the time and what could we do. Here's where I heard the most crushing thing - possibly we can do nothing. Being exhausted might be my new normal. Not what I wanted to hear, but I'll come back to this. After the doctor left, I just wanted to sleep.

Now, here's where things get weird. I was laying in the chair, resting, totally drugged up. I felt like my body was going numb. I thought I was dying.

[Note: I was not, and am not dying. Nothing even happened that I would consider an emergency. This was entirely in my head.]

But I felt dread. That with my body feeling numb (except it wasn't quite numb, almost weightless, like it wasn't there, if that makes any sense at all). I really thought this was it. Once, if not twice, the IV started beeping. I actually said "I'm dead now." It was very surreal feeling. But I wasn't scared. I didn't feel panicky. I was just so tired. This feeling came and went several times yesterday - even after I came home. I have no doubt it was the combination of the drugs, the allergic reaction, and my exhaustion messing with me.

Today I still feel exhausted (though I did make it to work and worked a full day) but the fatigue is lingering. I woke up feeling like I had a hang-over, but without the fun of the drinking.

But I keep going back to what the doctor said - this tiredness may be my new normal. I can't lie, it feels crushing. I just want to feel good. I just want to feel healthy. I just want to be energetic, bouncing around, ready to go. I don't like having to plan things around naps, or planning a late start knowing the day before I'll be going all day, so I'll need to sleep for several extra hours.

In the grand scheme of things it isn't a huge deal. It could be worse. I've been through worse. But still, the fatigue lingers on and on. And I'm so tired of feeling tired. It's almost as if feeling tired makes me feel more tired. It just weighs on me. I had a period this summer where I did feel pretty good and my blood work looked good, but it just bombed again. And I really dislike it.

On one hand I don't want to accept it, I want to fight it. But, let's be honest, I'm too darn tired. I'll keep eating well and do what I can. And amidst of all of that, I'm going to have to step back at times and accept I can't do it all (but, really, I never could do it all).

So. Yeah. That's where things stand. Sorry if it's a bit rambly!


  1. I'm sorry to hear this. With my arthritis (RA), I realized that this was not something that could be fought so much as accepted. It's a hard hump to get over with any chronic condition- you have to make peace with it on *some* level. That said, I am medicated so maybe it's not a fair analogy? But even with medication, over the years I've learned there are times I simply must listen to my body and if it says, I really, really need a nap, then I'm better off napping than pushing through. Make the most of the times you bounce back--there will be more! And give yourself a break when times are tough.

    Those were some weird experiences. Did Eric hear you say you were dead?

  2. Hi Brandie,

    I'm so sorry to hear this has been your experience, and the iron isn't working for you. Have you tried IV Vitamin C? I am having this treatment at the moment, and they say it's also really good during chemo as it helps fight off the fatigue. Even if not in chemo (I'm not in chemo) it does give me an energy boost. Maybe you can find a naturopath who focuses on oncology and look into it?

    Take care and rest up,

  3. I'm sorry you had a reaction to your infusion. I've seen some reactions when I worked in the infusion clinic. Of course, the nurses are so quick to react. I'm glad your nurses were on the spot. I'm sorry that you had to go potty really badly during all of this.


Seeing your comments makes me smile! Thank you so much =)