Friday, September 26, 2014

Life Can Change in a Minute

(the sun setting in Island Park
A person's life can change in a minute.

I am not the same person I was this morning
(when I posted last and said so confidently: LET'S DO This!

After receiving my

2nd loading dose,

 after 20 years of dealing with Crohns (and whatever else);
suffering devastating and body altering surgeries,
pioneering other biologics and TNFs,
then, for the ultimate kick in the teeth, staying on high dosages of prednisone for almost 3 years while trying and failing everything there was left; - I changed, again.

Today's infusion brought an overwhelming mix of emotion, pain, nausea, and a "time still" in life.

Just that word, life, is the reason I have searched the halls of hospitals, clinics, specialists, and God.
(and I guess the reason that I am blogging while feeling very much devastated in body and mind. But I have to document it for others that might need help in their decisions or during their own... uh, trial? Or their own prednisone melt down or go through something they can't make sense of at the moment.... ?)

(Me, eying the cut up Birch tree from my Grandfather's yard. Anyone see a gift or craft? I do!)

I went into the infusion slightly light headed and dizzy- possibly needed more fluids. Padre was my ride as I told you before and he managed to squeeze in all sorts of odd jobs in before it was down to the wire. So I had to hoof it through the winding halls, up the elevator and around the ICU floor to check in. Felt flushed and faint.

Padre got me Gatorade and after the secretary in the check overheard my cell phone request she jumped up, got me an orange juice, some Saltine's, and a graham cracker Keebler packet. I fumbled to get the saltine's opened and flipped to a page in my magazine about a cancer survivor.

She was a black woman who had breast cancer at the young age of 26, or so. The Phd giving quotes said that [she] was a different person than before cancer. Her body was a physical manifestation of the "war" she had been through. Already the salt was coming out in my tears.

(loved these Salmon colored Impatiens beneath the Little Leaf Linden out front. Fall is underway...)

YUP. She may have reconstructed breasts but I have some marks of my own and I feel I could relate to her when they talked about the real "journey" of survival came afterward; when you faced life after becoming mentally and physically altered.

Stats showed that many survivors suffered from sleep deprivation at 5.5 years afterward. They suffered some other noteworthy things that I was deeply empathetic toward. These big gun drugs change everything.

I know that when J. said that he identified with "a different" person coming back from a hard flare to a brain injured person that I can't recall his name (not chemo brain but predno/post concusiion brain)
it was obvious and apparent to a kid that Mom had changed.

I had brought other mags to tuck away my fear, and I enjoyed the positive conversations I had with each person I met with that afternoon. I made a point to try to calm down, down A LOT of fluids to pump up my veins, and try to think PAST the infusion.

(this petunia's root base was dried up from- lack of water- so I kept it lacking and stopped showering it with H20. The leaves started to turn yellow and orange and I one day.. I saw a BUD,  It bloomed at the last minute..... Crazy flowers. There is a moral in that but I am too tired to put it in. Getting pics up is a huge deal. Thanks Padre.)

A male nurse with a German accent came and escorted me to the infusion room. I left my Grandinroad Halloween Catoloug with the kind secretary.  Drake (fake name) grabbed my heavy silver bag, drinks, and I think I just carried my cell phone to the busy room next to doors that opened only to surgeons and nurses dressed up for surgery. My stomach flips at the sight of those paper uniforms, caps, and the anonynimity. Warm eyes brighten up, however and so it isn't ALL bad.

Immediatley I parked myself in the "stall" the only thing separating me from others- the curtains. It was really busy. So I quickly grabbed some wipes to do a good clean down- the student nurse said she had done it but would do it again. I sat down and nervously turned on the TV to some show about people who go to jail. Needed distraction. Then I was sickened by it and was needing MORE distration as the left arm vein rolled out.

Turned it to a survivor show where some guy had his buddies, who each ranged from Green Berets, Navy Seals, to a guy who looked like Seal- minus the scars. They put a bag over their friend's face and flew him from point A to B which happened to be in Finland and dropped him off with nothing more than a leather tank top and shorts. hmm. It was called You're Screwed. The nurse was struggling with my right arm and a vein blew after we thought we had it. The shows title seemed to be a foreshadow.

So I turned it to CNN to see that The President had made it clear we would stop these threats or something and here is where it gets fuzzy cause we have to go for the painful spot on the base of your thumb. The nurse sprayed numbing spray for good measure cause I think she was sstarting to get nervous. I was starting to wonder how we would get this med, Entyvio, IN me.


(My fav. plant settled down for its nap at 2 pm......)
Note to long time pred users: it attacks your veins. I know, I know. I say this all the time. It gets the skin. It gets the muscles. It will probably rupture my achilles after doing a number on my tendons and ligaments. But when it blows veins..... there is a feeling of helplessness in it.

Did I mention she was using a NICU needle?

 "Lu" (I picked the spelling - she went with that for her name for the blog) finally got it. Then it started. I think I set them behind by a bit.

I want to say that it is my son who I thought of when it was "too much." By that I mean the wave of the new med dripping into my body. Slowly the news feed about how much precaution the whole US was taking with the threats over the net to have rogue, Lone Wolf flea bags to do whatever they needed to in order to shake things up and scare us, got fuzzy.

Due to the fact they had to numb me, where they stuck the needle-felt like a dental appointment, when they shake the needle deep into your gum. It stings but then feels like a tight pressure is starting to build and overtake that area.

So my wrist felt like a cavity filling. But it was in.

When I felt the onset of a baaaddd headache I tried to reach my Dr.  No answer from his nurse. So I just carried on. Then I started to get emotional. Then things went from bad to worse in the 'I feel really crappy department.' For one I had to go # 1. And I was getting some cramping. I hated to bother anyone cause it was busy and I sorta wanted to just take it all in.

i cried.

It helped.

I finally caught a nurse in passing and she slowed it down. The other one helped me to the bathroom.
My IV slipped out, almost losing the vein with just drops left to get in. Expensive drops!!!!
But the nurse delicately put it in for the last tsp. She held it in place for TEN minutes.

She cried.

I cried.

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