Baldies' Blog began originally in the UK by a 26 year old journalist with a blood cancer on a mission to inform the world about bone marrow donation.

He has since died, and I took on the cause of making cancer care more transparent for everybody.

Cancer is a disease that will touch everybody through diagnosis or affiliation: 1 in 2 men will be diagnosed and 1 in 3 woman will hear those words, "You Have Cancer."

I invite you to read how I feel along my journey and
how I am continuing to live a full life alongside my Hodgkin's lymphoma, with me controlling my cancer, not my cancer controlling me.

I hope that "Baldies' Blog" will prepare you to handle whatever life sends you, but especially if it's the message, "You Have Cancer."

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Saturday, April 2, 2011

How to Remind a Patient of Their Mortality

There is no faster way to remind a girl of her morality than to inflict her with a very serious allergic reaction to. . . . . who the hell knows?

At least, "who the hell knows where this came from" was the consensus of the Doctors when I waltzed into two separate ERs on two separate occasions seeking a cure, or at least relief from the severe itching, from the raised red welts  that had taken over just about every inch of my body, except my face, mouth and throat.

Let's take a moment of silence to thank the higher power again for allowing me to survive the initial attack from whatever this is and not allowing it to affect my respiratory system.

IT started suddenly on Weds.

My visiting nurse had been at my house 5 minutes earlier. She had changed the dressing on my flank wound over my kidney stent.

She had accessed my mediport and started my fluids.

I have a liter of fluids ordered in hopes of stimulating my kidneys this week so I can get rid of the nephrostomy tube.

Then, instead of going back to sleep and resting peacefully as I had planned after she left I started to itch. It first started everywhere there was a skin fold: where my hip meets my torso, where my breast meets my ribs, my armpits, etc.

I started to scratch uncomfortably.

I quickly popped 25 mg of benadryl thinking, "That should do the trick. I'll be out until tomorrow."

Well, it didn't. It got worse.

"Prednisone." I thought. "I need to take my afternoon dose of prednisone." I popped that.

Nothing. NOT. A. DAMN. THING.

Then, like all the divine interventions before, my mom showed up,  really out of no where, to drop off my groceries, and saw what I was itching were huge, spreading, red, raised welts.

She insisted I go to the ER, immediately, the closest one, just in case it traveled to my throat and I stopped breathing.

So I gathered up my IV fluids and with my pee bag securely pinned to my pants we hurried to the ER.

My mind was racing.

Where did this come from?

I wanted everything out of me. The damn stent, tube, bag: that all needed to be surgically removed immediately.

The port, rip it out.

In rare cases, patients go into anaphylaxis from a missed access, maybe that was the cause.

All my clothes needed to be changed.

Every dressing needed to be new.

In fact, I needed to be cleansed of all the toxins in my body, immediately. Even coffee enemas weren't out of the question.

I scurried in to the ER looking like I'd all ready been treated, blood flushing backwards into my IV tubing.

I was placed in the crash room right away only to have my nurse friend discover that somehow, along with my allergic reaction, in the past 20 minutes or so my mediport had clogged or clotted.


I take blood thinners from a past pulmonary embolism.

My mediport has a positive pressure cap to disallow clotting.

There is likely a .001% chance that a port like this could clot in a period of 20 minutes, exactly when it's needed, but then again, this is me we're taking about.

This is Murphy's Law, personified.

Not much could be done for me without venous access.

I was given more benadryl. I was quickly up to 75 mg for this reaction.

The ER doctor called Dr. G who got the oncology nurse working in Claremont to come check my port.

Even she had trouble! We took out what had been freshly placed and replaced that.

At least, I think that's what happened, since by then the benadryl had gotten to me.

I was released, still swollen but less itchy, and told to get tegamet, which of course I did, but did that work.


So I slept restlessly, waking up to itch and take into account how much the hives had spread beyond my skinfolds when, finally, at 4 am I woke up ready to take a potato peeler to my skin.

I turned on the lights in the bathroom only to see my rash had spread to one massive red raised mass EVERY WHERE.

I made a quick phone call to my go-to people, the ones who are always there to rescue me in the middle of the night: the parents.

And of course, Dad was here within the half hour. Jon was pacing trying to pretend he was calm, doing Dad duty, staying home to take care of X.

Sorry, to be continued. Just haven't had the time, you know, fighting for my life and all.


Aunt Lysa said...

Hi Hillary, I hope your rash has finally gone down some by now and the itching has subsided. I know you won't let a whole body rash stop you! Hang in there girl. Love you.

Anonymous said...

Hi Hillary,

I'm sorry to hear of your latest challenge. I will continue to pray to God for your healing, peace, and comfort.


Loraine Ritchey said...

Hillary you continue to amaze me - how you can write in the midst of such trauma- well you are truly wonderful!!!!

Anonymous said...

You rock girl!! Like other posts, I'm amazed at your courage & tenacity ... writing even when things aren't going well. Just know that you are making a difference & that you are an inspiration.

Stay strong sweetie ... & know you are often in my thoughts.