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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Tuesday, August 18, 2009

Keeping Chemo Cute

I think mondays may be off the posting schedule for a while.
It's a busy day.
 Labs by 8, G or anna by 8:30, and then chemo by 9:30.  
Chemo doesn't happen quickly. I am laid out, attached to a pole until 2:30 when I can head home to sleep until Tuesday.
This takes long enough to have Brynn, my partner-in-chemo-crime and the blond version of me, delete about 1000 unwanted emails.
She also help to remind me that I do somehow manage to keep chemo cute.
One thousand down, three thousand to go. I am so excited she offered her assistance to organize me technologically.
When I say sleep until Tuesday, I mean I wake up to cater to X until he goes to the sitter/school wherever, then I go back to sleep until noon. My body needs recovery time.
I do have a couple appointments coming this week. One Thursday I am getting a mediport placed. This is a central line that hides under my skin so I have easy venous access for infusions. The chemotherapy I am receiving is caustic to the vein and can be painful if put in through just a regular IV. So I'm getting a mediport.
Love my mediports.
I also may see Palliative care sometime this week to discuss my pain control. I met with them quickly yesterday while I was in the infusion room. 
An appointment with them has been on my list of things to do for a while now.
We basically only got to discussing what I would like to continue to achieve and how I would like to feel while undergoing therapy before they had to run off.
I did hear a little talk that, maybe, 60 minutes is coming to review DHMC's palliative care center this week and possibly it could be arranged that I be around when this happened.
Let's cross our fingers and hope this can be worked out.
Really, when you hear the phrase "palliative care," am I the stereotypical face that flashes before your eyes?
No. People that need that kind of specialized care are old and decrepit. They are not twenty-somethings writing blogs and bouncing around with ideas for healthcare reform.
But I am extremely sick, and I do need palliative care to manage my medications so I can continue to contribute in a meaningful way to life and society.
This week was extra special, x came down with a nasty bug sunday night. With temps of 103 and up, I spent the night giving baths, motrin and tylenol and sleeping when sick x dictated I could.     
Even cancer doesn't get me out of mom duty.  Poor x was so sick. 
I did get a pass for caring for him yesterday, when the explosive diarhea came. That was jon's caretaker day.  It also happened to be jon's birthday. At least he got a day off from work.        
It is not hard deciding whether or not to care for x when he is sick. My maternal caretaker instinct wouldn't allow for him to suffer with out mom tlc, but there is always the nagging voice in my head asking "am I going to get this? Could taking care of him kill me? What if I get a temp next week when my counts are down? And how would that affect xander? He all ready feels responsible.....".  
 I've made the choice for years now to care for x with as many precautions as I can. some things in life and living are just more important than my constant protection.  
Actually, the farther I get along on treatment, the less the world is about me, the more I see my actions as a part of a larger whole and gauge whether to proceed based, not on the outcome I want, but on the possible outcome for whomever will be effected by my actions. 
Maybe, it's a process of detachment from this world, but it has stopped me from proceeding with some selfish wants.    
I wonder if this is a mentality I'll keep. I'm understanding the implications of my illness and proceeding with my life and goals the best I can.
Sounds simple enough? We'll see if I can keep it up.

1 comment:

Anonymous said...

60 Minutes! Wow! That would be so awesome. You could have a national forum to bring even more attention to health care reform.
Go, Hillary!