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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Thursday, January 14, 2010

Back to me


My mind has cleared enough for me to organize my movements. I'm finally starting to get my life back in order starting with cleaning the piles of clutter from my house.
I have started to organize our second floor which turns into a no man's land during my periods of disability.
Being sick for so long, I recognize the cycles. Four to six months of treatment and eveything gets thrown every year. The rest of the year is dedicated to reorganizing and figuring out what we need, what we don't, and what to do with everything else.
When Jon and I built our house we had a specific vision of our life. We built a cape with a master suite on the first floor (my best decision ever) fully equipped with a master bath and walk-in closet for me.
The rest of the bedrooms we placed on the second floor along with one large bathroom and plenty of storage. One large bedroom is dedicated to Xander built specifically so Jon could give X the room, and hopefully life, he had always dreamed of growing up in a 6X9 room of a trailer. The other two, which had been created in anticipation of adding to our family, have been made into guest rooms hobby rooms.
We certainly didn't expect that I would not be able to climb the stairs to access any of the space on the second floor.
Our house is gorgeous.
It's just not handicap friendly.
I've consolidated most my hobbies to the first floor. I have a little corner office in the living room with my computer equipment.
Now I'm starting to eye a little corner of the dining room for art supplies.
We also have a large fabulous basement.
Do I/ can I go down there?
Absolutely not, never ever.
It's dusty and unfinished. My lungs start screaming just when I look at it.
On the brightside, doing the laundry is no longer my chore. Prior to my steroids, I had no chores.
It's been hard for me to manuever back into the world of the functional living.
What exactly am I supposed to do with myself?
What are my roles here? When I was diagnosed I defined myself as a hundred different people: a wife, mom, nurse, student, artist.
Now I have no definition, and telling people I'm a cancer patient makes for some interesting discussions, but it's not a title I want to hold on to.
Cancer survivor, now I'm liking that.
I'm going with artist: My new entrepreneurial effort, maybe, a little online store attached to the page.
This past summer I started making jewelrly in hopes I could bring in extra income. Maybe that's where I'm headed.
I'm taking a pottery class Weds. in Hanover. With the steroids, I felt a compulsive need to be doing something with my hands at all times.
I knitted during my first transplant, but never moved beyond scarves. I also was TERRIBLE. You could tell when I would get sick or drugged. The knots would be tight, then loose, and then there would be holes, but they were filled with love.
I found two scarves waiting for me to finish yesterday. They've been waiting about three years now.
I like art that provides some instant gratification.
We'll see where the road leads. I've been enjoying myself day in and day out. Xander and I were able to manage this past week with Jon out of town on business. X is now on my schedule (6:30 am waking and 8pm bedtime) which makes me happy.
It seems to be making him happy to, his teacher said he's been having a great week. That could have had something to do with the crystals he brought in to share with the class on Monday. He actually requested to do a presentation on rocks. Now, whose son is that?
We've also been discussing his anxiety and anger issues. It is so much easier with his developing language, but I'll keep that for another time.
Off to start my day, I have a date to explore the upper valley, specifically Simon Pearce today, something I have always wanted to do but never had the chance.

4 comments:

Patricia said...

Thank you, Hill. For your inspiration of course, but also for showing me one day at a time is the best way to live life.
Have a great weekend.
-T

Anonymous said...

Hey Hillary,
If you would like someone to finish your scarves for you please get them to Nicole or Debi D. - they can get them to us and my daughter(Nicole's cousin) would love to finish them for you! She is an awesome knitter and she loves to share what comes easy to her with others. She just knit a scarf for Nicole. Please do this - unfinished projects add to clutter and it would be a shame to have them go to waste.
Take care,
Jenny Wojenski

Anonymous said...

You blog inspires me to live my life to the fullest and not let anything get in my way. I am so happy the steroids are working and giving you quality time to spend with family and friends. You are a TRUE SURVIVOR!!! I have followed your blog for months and want to thank you for sharing all your stories and thoughts through your cancer journey. Stay Strong Hilary and keep smiling!!

Anonymous said...

Can't wait to see some of your artistic creations. I too am healing through art - took a while but I finally got there. Funny how you actually have to start feeling better before you start your spiritual healing