Part 2 of the Infusion Chronicles

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For those who just want the short version, I am alive and I have a pint of real live iron in me, woohoo  (:  I’m sure you’ve never heard someone say that before, and I hope you never hear it again.

(Except from me every friday from now until the end of February, haha)

If you are one of my strange or curious friends who have asked to hear the whole second part of the story, here you are:

Getting prepped for the second infusion is much like  last week’s, except this time they have a nice line-up of steroid/Benadryl cocktails beside the bed ready to go, and a big sign on my forehead.

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While getting my BP monitor hooked-up, the nurse gets a kick out of the look on my face while I stare in horror at the needles on the tray. Apparently it isn’t the most enthusiastic expression in the world.  She urges me look away from the needles and do something else, so we decide to capture the excited expression on my face instead.

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After she’s done laughing at me, the nurse says “Oh come on girl, you can do better than that, smile!”  

Just for her,  I give it a try:

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Nurse: “Hmm. Maybe we’ll just give that another try after we get this done. That’s just sad.” 

Yes, yes it is.

Once the IV is in my arm, she slowly begins administering the new form of iron, staring at me like I’m some small explosive device thats about to blow. The doctor has decided to do the test dose without pre-medicating me to see how I’ll react first this time.  The nurse asks me to let her know if I start to feel funky so she’ll know if I’m going into anaphylactic shock again.   I tell her not to worry, that the last time that happened everyone in room knew my body was going berserk in it’s own charming way. No words necessary

The amount she’s giving me is incredibly small, and it’s going in incredibly slowly.

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She’s halfway through and I think we’re good to go when I feel a sharp pain in my lower back. Thinking it’s unrelated, I begin to shift in the bed/seat I’m resting in, trying to adjust how I’m sitting. Suddenly I begin to feel woozy and light-headed and like I’ve just downed several very strong drinks.

Without a word she pulls the test dose out, glances at the BP monitor and numbers dropping, pulls a bottle off the tray and shoots me up.

“Um, please don’t tell me..”

Nurse: ” Yes, you’re allergic to this one too honey, your blood pressure is dropping.  I don’t know what we’re going to do with you but don’t worry, I just gave you a good amount of steroids that will counteract it, and we caught it after such a small amount, you won’t go anywhere near where you went last time.”

She’s right, and soon enough my blood pressure begins to normalize and I start to feel better.

Physically speaking.

Internally I’m beginning to feel more than a little discouraged and wonder how I’m ever going to get a foothold on this if everything I put in my body is treated like it’s poison.

My nurse goes to talk things over with the oncologist and returns with not-so-favorable news.  He says there is only one other form of iron to try, and it’s considered the ‘big dog’, even more potent than the two they’ve already attempted. So we can either take that risk with a new scary iron, or drug me up now and go ahead with something we know I’m allergic to but might go in ok if I’m protected by steroids and Benadryl.   Then we’re left with blood transfusions.

She just said the magic word. Blood transfusions? Heeeeeeeeeck no.

I tell the nurse it would be a shame to waste a good dose of steroids already in my body, so lets go ahead and drug me up with the rest of it.   They go over the risks with me, making sure I understand that they just confirmed I am allergic to what they’re about to administer, but in best case scenario the steroids should keep me from going into anaphylactic shock.

“Well that IS encouraging, now isn’t it?  Look, I really cannot do blood transfusions, it’s just beyond the realm of possibility for me. Ever.  So if this stuff  is the end of me, so be it. I’ve got better places to be anyway. The truth is we all know now I’m going to allergic to anything we try here, right?”

“Yes”

“Well, then it’s now or never”

I take a deep breath, say a prayer, and close my eyes while she hangs the stuff.  It looks sort of like a coffee drip, and my nurse says it smells like a good cup of joe too. To keep myself from being afraid I tell myself that is all it is.  I’ve always said I need a coffee drip.

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Dun dun dun. Yes,that tiny little bag of espresso-looking stuff is whats causing all the hubbub. Well, it’s my body fighting the tiny little bag, but whatever,  I want to get the happy part of the story.

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It goes in. Nothing happens. It’s like hearing the sound of quiet for the first time. Beautiful.

Yes, it’s true, I make it through an entire infusion! The good little steroids do their job well and I am able to complete everything without experiencing much of a reaction at all. The only adverse effect hits about 15 minutes prior to the end of the drip and I start having pretty intense back pain. As long as it’s not putting me at any risk, I tell the nurse I can deal with pain.

About ten minutes of feeling this I begin trying to lie down in a chair that does not recline to try to relieve the level of pain.  I look ridiculous and the nurse suggests a dose of morphine to give me some relief, but I tell her sincerely that with the luck I have with medication, I will more than likely have a reaction to that as well.

And then we’d be in DEEP do-do.

Plus, she says there is a good chance the doctor won’t let me continue with this form of iron next week if he learns of the pain I’m in, and may want to start the blood transfusions instead.

Let me tell you something, my friend. It takes some amount of crazy to turn down morphine when you’re exhausted and starving and in that sort of pain. But, that is how badly I want to get this done and over with and avoid blood transfusions at all cost.

Boy did I want that morphine.

But c’est la vie. I push through it by telling myself that the pain means it worked and the iron is in me.  They want to monitor me for any other post-IV reactions for a while as they run saline to clean the drugs out.  Four hours later we take a ‘thumbs up’ shot (which the nurse thinks is much better than my fake/sad smile picture earlier) and I’m outta there.

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sleepy haaapppy

Oh.  Where are my thumbs?  I guess we didn’t get them in the shot, they were tired too.

I pick up a beautiful meatball sub on the way home and find myself more grateful than I can say. One down, only 3 more to go.  I will sleep well tonight.

If these steroids ever wear off.

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The infusion chronicles

Oh, so THATS what anaphylactic shock feels like.

Hmm.  Yeah, I really didn’t need to know that.

I wasn’t going to write about this, but considering the fact that it may help or support someone else going through similar circumstances down the line (either now or someday) , I figure it might be worth pounding out.  Plus, it’s part of my life right now whether I like it or not, and thats what I write about- life.

I’d much rather tell you about the new orange flowers in my office or my most recent Trader Joe’s discovery,  but I suppose those will have to wait for a rainy day.

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(oh, and if you tend to be a bit squeamish about hospitals, needles, or negative things that can occur in relation to such things, this may not be the best reading material for you)

As mentioned before, I’ve had persistent anemia for nearly a year now.  Despite the doctor’s high doses of iron supplements and a regular iron-rich diet, my blood-work has continued to decline over the past 6 months and has refused to have anything to do with the stuff.  As a result of further testing and too many sad blood tests to count, it seems I have some form of Lupus, which can cause all sorts of mischief, including chronic anemia.

Thus, after months of protest, I finally relented to the doctors’ orders and agreed to begin receiving infusions through an IV, much to my chagrin.  This was mostly due to the fact that my iron was almost entirely depleted, and aside from licking tin foil I’d run out of ideas.

The last conversation I had with the oncologist overseeing my treatment went something like this:

Man in white coat: “You really have no choice in this Jen, you need to begin the infusions, and you need to begin them now”

“Alright, ok fine. What are the risks?”

Man in white coat: “Well, there is a slight risk of a bad allergic reaction, but I’m going to be giving you a type that is so safe I won’t even need to do a test run. In 30 years I’ve only had two patients react to it”

“That doesn’t sound so bad.  What happens if I do react?” (knowing if it can happen, it most likely will with me)

Man in white coat, now laughing: “Well, thats not going to happen, but if it did you’d be in a hospital and we’d be able to pull you off of it and counteract your reaction immediately.  But seriously, all you”ll really have to worry about is not getting bored for the hours you have to lie there”

His confidence and laughter were enough to put me at ease for the moment, so I set aside my intense fear of needles and the input of foreign substances entering my body, and signed my name on the dotted line.

INFUSION ATTEMPT #1. January 18th.

This past friday morning was the first of three infusions they had me scheduled for, and if I told you I was not dreading it I would be lying.

By the time the nurse has covered me in blankets, however, and gets the IV into my arm, I actually begin to relax. All three nurses in the room assure me that their patients never have reactions to this medication, and I believe them.

Until I begin to go into anaphylactic shock, that is.

Ok, so when they tell you to watch for any itchiness or swelling around your mouth, remember some people just skip that part altogether and go straight to the shut-down-the system part of things in one swift moment.

One minute I am fine and relaxed, the next I am struggling not to black out. Beginning with a sharp pain in my arm and chest, the reaction immediately progresses to a sensation of immense heat around my torso, nausea, dizziness and trouble breathing.  Hoping I’m having a panic attack, they quickly read my vitals. Nope. My blood pressure, which  began at 109/61 is now dropping rapidly. 90/55, 80/50, 78/43…

By this point there is no longer a question of what is happening, and suddenly everything around me sort of becomes a blur.

A blur of nurses.

I hear one of the blurry nurses say to another,  “oh my gosh, she’s going into anaphylactic shock”, whilst pressing buttons somewhere behind me.   Another one is at my right arm stopping the acting IV that contains the medication my body is reacting to. To complicate matters further, the vein has apparently blown on that side and is now rendered useless. To my left is another guy getting a second IV into my arm to administer benadryl and steroids to stop the reaction and get my heart pumping normally again.  All the while I’m warning them I might hurl or pass out and to please ‘just get this stuff out of me

Except I don’t use the word ‘stuff”.

When the nurse to my left tells me he’s giving me steroids, I somehow have the presence of mind to tell him I’d rather not because I don’t believe in steroids.

“well honey, I think you’ll believe in them now” he says, “they’re sort of saving your life at the moment”

Hmm. He has a point.

Seeing this, and realizing that I have no choice in the matter and sort of want to live, I ask him how long the benadryl will take to kick in. I am now entirely consumed with a desire for relief from all that my body is experiencing.

“um, now” he says with a smile.

At this moment I go into a very happy place and begin to feel rather like a very drunk little girl.  I suddenly think it is HILARIOUS that there is a man standing there checking my blood pressure and heart rate, and can’t understand what he means by ‘don’t touch the light’.

“What light? You mean a lamppost? No lamppost here mister, just stars.”

I wish I could tell you all I said or didn’t say from this point forward, but I’m afraid I have very little recollection of all that transpired once this darling medication took effect. I do know the nurses were finding great amusement in whatever I was saying, I know I could not finish any of the sentences I began (though I was trying very hard), I know I was flirting with something or someone in the room, and I know I promptly fell asleep.

So that was Try #1.  I’m hoping with all my heart that Try #2 is much, much less eventful.  The doctors are now on alert with me, aware that I am one of the freakazoids whose body will do all the things it’s not supposed to do, the sort that is referred to as  ‘the exception’ in Dr textbooks.

In layman’s terms, I’m just called a ‘pain in the arse.’

The good thing about the plan for this friday is twofold:  First, they will be giving me a new form of iron, hopefully one that my body will not treat as poison. They will begin with a test dose before administering the full treatment, now aware of my risk factor.

Secondly (and most delightfully in my opinion) they will be pre-medicating me with the benadryl and steroids before they even begin, in order to protect me against another severe reaction.  So even if my body does go berserk, I’ll already be on cloud nine and won’t care.

I’ll be updating this post as things progress, hopefully with some better news this next time.  I’m incredibly grateful to God for his protection through this adventure, and the kind nurses who are taking such good care of me of and putting up with my antics.

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INFUSION ATTEMPT #2. January 25th..