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, March 27, 2010

It is what it is

I'm feeling a little like a rock star.
I'm feeling like I'm getting my mojo back.
Getting a nasty virus and kicking its ass like a person with a normal immune system can do that to a patient like me. Healing like this makes me feel all warm and fuzzy inside.
Usually the process goes, step 1. nasty virus step 2. bacterial infection step 3. pneumonia step. 4 F***ed, hospitalized and spending the next six weeks recovering.
Not this time, no sir, not me.
I spent the majority of two full days (Tues. and Weds) unconscious, as I should have been, receiving great care in the hospital.
I remember feeling so thankful and so relieved that I was being taken care of and I wanted to make sure everybody knew how grateful I was about it without sounding like I had a cheesy case of the "I love you mans."
Then I was well enough help care for X Thursday.
Well, J did the majority of the care taking, but I had the capacity to parent which is more than I generally do at that stage in the process.
I've been laying low these past couple days, but I've been able to maneuver in society.
We went to see "How To Train Your Dragon " (loved it), and I was able to have ANOTHER girl's night.
This one kept me out until a wild and crazy 10pm!
I hadn't realized how long it had been since I ventured out into the adult world past the kiddies bedtime.
It's been a while.
It's been long enough that at 8pm X checked the clock and demanded to know where I was. He did this again at 8:05 pm and 8:10pm.
Apparently it's been so long since I've been out in the evening, X had set a curfew for me.
That curfew is 8pm or his bedtime
Being late for this curfew is punishable by groundation according to my little man, and I am definitely grounded. J is expected to enforce it.
At 8:54 X finally looked at J and asked, "Is it okay if we go to bed without her?" as if the possibility of going through the bedtime routine and going to sleep without me was so foreign he didn't even know if it could be done.
I really like the grown-up life thing, but I'll be sure not to get too attached.
Just in case.
I did just barely start getting the urge to eat back today so I'm not totally in the clear.
On the flip side, I did complete two more rounds of pharesis, and I've been able to have a life.
I'm making plans whole weeks in advance!
Here is another reason I'm feeling like a rock star: I was invited to a celebration party with Sen. Jean Shaheen (D-NH) on Monday. I've been tentative about celebrating the health care reform bill until it's completely finished with due process, but I'm getting more confidant.
The advocates are too, because some thank you celebrations have started.
And I was invited!! Me! To a party with Jean Shaheen, who I idolized from the closet in a republican household when I was a teen, because she was our strong female governor. The Jean Shaheen who has been a longtime supporter of things like stem cell research.
I know it's geeky, but whoa, I feel cool.
But where will I be Monday?
Meeting with with the Big Boys in Bean town.
I'm seeing my pulmonologist, Dr. G Weinhouse at Brigham and Women's, who I all ready love and would recommend to anybody, and of course, Dr. Alyea, my long time go-to transplant man.
I'm confident he's the very best as well.
We now can all tell where my priorities lie. The men who keep me alive outrank the lawmakers.
If it was a party with Paul Hodes it may have been a different story. He is an amazing voice for patients such as me. I know he worked hard a dedicated himself to the passage of reform, and I am incredibly thankful to him.
I can't wait to join in the discussions closer to home. There are some fabulous bills being reviewed in NH to streamline health care processes. I'll write more on those later.
I'm glad I've made it back to this point.
I do still think how I'm feeling and recovering is mostly miracle though. I've been blessed by so many things.
It also could be that since I am so backwards that an extremely rare freaky side effect like bronchiolitis obliterans with a survival rate of 5% could be cured by some steroids, zithromax, and voodoo procedure that's best evidence has come from a study of sixty people.
I always did like to be in that odd percentage.
When I was in school, I had to be an overachiever.
When I got cancer, I had to be in the rare 20% that didn't get cured by ABVD therapy.
It's just the type of girl I am. It is what it is.


Anonymous said...

So happy that you are feeling better. Stay strong, Hillary.

Anonymous said...

Good morning Hill. Glad you are feeling stronger. I was amazed when I read your father's point of view of the last week ... you are something special Hill. Certainly tougher than this old ex-Marine.

Hope this week finds you enjoying more strength & normalcy. Know that I'm thinking of you.