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."

Get a playlist! Standalone player Get Ringtones

Tuesday, December 7, 2010

Life #12

I got ahold of Anna yesterday.
She said I was REALLY out of it at our appointment, and that I was being picked on pretty heavily.
What I do remember are people laughing.
I guess that should have helped ease my anxiety, but I'm sure the new steroids didn't help that.
The official word is that my tumor is slightly smaller.
The bad news is I'm barely getting any chemotherapy and it's reeking havoc on my body.
I shouldn't be experiencing bone marrow failure and respiratory distress on so little treatment.
And there is really no going easier on me.
My Docs have chosen the easiest course of treatment they think would be effective.
I'm still disturbed.
I've forgotten far more than my appointment last week.
I guess during my admission I went into respiratory distress twice.
I don't remember either time.
Once was in the evening and I called my Dad to come stay with me.
The second time I collapsed on the way to the kitchen and had to be wheeled back to my room.
According to my mom both these episodes were severe.
Now things are making sense.
Of course I'm going to receive a lot of help at home, and hospice would be appropriate for a young woman who is going into severe respiratory distress daily and insists on going home.
But I didn't think I was insisting. I thought I was going with the plan.
My first reaction when things like this happen is, "Why the hell didn't anybody tell me?!"
Well, I'm pretty sure it's because no one ever thought I could forget something like that.
 I'm on my 12th life at least.
I thought I was being discharged home because that was the plan.
I was also told that all the goodies I got, the comfort packs, etc. are not for me to give myself. There for the nurse who will come to my house at any time day or night if I have a problem.
DAMMIT.
I was all excited to have some autonomy.
I don't remember this either.
What I do know is I like the services I am receiving.
I want a nurse available to me 24/7 to come deliver me fluids, pain medication, IV anti-vomiting medications.
It was also explained, I'm told, that this doesn't mean I'm dying, I'm just getting better services.
I don't care what they need to call it and what they need to say to get me what I want as long as I'm comfortable.
Usually, with hospice, you have to agree not to call an ambulance if something occurs and not to run to the hospital.
I was very clear that I'll never agree to that for the sake of my family.
I will always want my family to have the option to call an ambulance.
I don't want to die at home.
I don't want to taint any of our beautiful home life for any of my family, especially Xander, and if that means having to be in a hospital then that's what it means.
I am happy to have a clearer picture, and now I have time and information to make up my mind about future treatments.

1 comment:

Bekah said...

Please go see Dr. O'conner,
Or at least send his NP an e-mail. Just... ask questions in the e-mail. Say you are a friend of Bekah's... you ask great questions Hill.

Explain your diagnosis, and some of the treatment you've been on. Please, for me?

E-mail Ellen: Ellen.Neylon@nyumc.org
What do you have to lose?

You don't have to be going through this much pain with chemotherapy, and the bone marrow failure, you want to steer away from normal chemo.

But, you know all of this.
Please, e-mail her.

Sending love and healing vibes,
B