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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Monday, October 19, 2009

Praise Jesus!

Praise, Jesus!
I may finally be going home.
Yesterday, the superior of my two attending surgeons, who I had for the week, appeared and finally okayed home oxygen.
Unfortunately, that’s not something that comes so easily on a Sunday. Having me leave the hospital is a project.
This morning, I had a whole new set of caretakers (which included Ms. Surgeon from yesterday) who understood that my primary concern was my desaturation on exertion.
I wouldn’t even say “on exertion” because that implies that I may be excercising or doing something strenuous. I would say desaturation upon movement.
So since it’s Monday, Visiting Nurse can be called to arrange for my appointments, New England Life Care or Keene Medical or whoever is going to deliver my 02 will be available, and I can go home taking care of myself.
Of course, someone from heme is probably coming around to consult on me regarding this little inability to breathe problem.
I’ve only been asking since Wednesday when I was moved from the fourth floor.
I guess I wasn’t clear enough.
I don’t usually have a problem with making myself clear though. HHHmmmmm. . . .
What I really wanted was a person with the initials MD after their name to write for at home 02 since I’d been told a pretty flat out “no” despite that crazy evidence of desating with activity, gasping for breath, etc.
It’s really only air. Silly me.
I was also told that the surgeon, “couldn’t force anybody to see me” regarding the consult.
Well, I thought that was exactly what an order was, and what the hell was he insinuating? That this whole not being able to breathe, shaky, faint thing was all in my head and nobody else would be interested?
I’m pretty confident that most practitioners would look at vital signs with a BP of 80/50, a heart rate of 122, and a Pa02 of 88% and think, maybe some thing is wrong here.
But I’m just being bitter.
So I’m happy. I am feeling like a caged animal. I do have a huge picture window with a fabulous view of the foliage.
Want to know my favorite scene from this window? It was some twenty-something patient walking up and down with a mask on her chin, ten different IV meds hanging, talking on her cell phone and smoking a cigarette.
I just wanted to have the hand of God come down and smack her or pull some freaky Friday stuff where she sees what it is like to never have smoked a cigarette but be unable to breathe.
Now I’ve seen the discharge coordinator.
I have the official what’s up.
I can be discharged. If heme can’t get to me, I’ll see my team outpatient. I am only waiting for one of two agencies to get me my oxygen tank.
Can I tell you, when I envisioned twenty-seven, I really thought I’d be attending my child’s soccer games from my car with an oxygen tank and a chest tube.
I bet you can feel the sarcasm dripping.
I did envision that child average four goals a game. Holler. At least I can remember how I moved vicariously through him.
It is what it is and now that I have finally gotten to a point where I can leave with the equipment I need, I’m happy to have what I have.

1 comment:

A lil Bit O'Lula said...

Hey Darlin!
Just wanted to let you know I was thinking of you! I'm glad to see that Hill Humor ;) Hope everything is going better!
Lots of Love,