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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Wednesday, October 29, 2008

Playtime


Weight-? Lbs (Who knows?), Daily Meds-24, Pain meds-35 mg, Temp- 99.9, 100.2 & 99.5 liquid, 1 cp. Coffee, 4 cps of tea, 3 glasses H2O (or a lot, more than 2 lt), Food- 5 honey buns (I can’t resist), 2 pieces wheat toast, 1 bowl cheerios with 2% milk, 2 choc. Chip cookies, one turkey, cheese and mustard sandwich on a bulkie roll, one package frozen broccoli & cheese (thanks green giant), 12 oz roast beef with mushrooms, green beans & tater tots (You go for it and add up the calories).

I decided I needed some good solid girl time. Isolating myself and watching old seasons of Sex & The City were just not working for me.
Maybe I’m prude in my old age, but Carry kept (take a deep breath). . .smoking. You could tell it was the 90’s.
I had to shut it off when the girl porn scenes came on because I was embarrassed to watch it in front of my Aunt, and so we’re all clear, Sex & The City is girl porn.
I don’t understand why so many men railed against our female nights when the film came out. Many of you treated us like we were running off and cheating with Carrie, Samantha, Miranda & Charlotte. Maybe, it was the after parties, and the ideas we might be getting?
So I made some phone calls, and in cancerageous style, two of my closest girls came by so I could see what my hair looked like red, and I could play dress up and pretend I was a model before I go bald.
I was given permission by my team for my “regular friends” (as in the ones I see daily) to come by without total restrictions. Taking off their shoes and jackets and washing their hands is still required.
I don’t think my team knew how many regular friends I had. I’ve been keeping them at arm’s length, but I’ve had enough.
So Jenn, Xander’s perfect fill-in mom who takes in him to school, gets him dressed, and feeds him breakfast in the morning when I’m away, then picks him up from school and keeps him happy with Colin (5), Ethan (3) & Jerry (?, her husband) came by with Colin.
Then Alissa came by, the alpha mom, who also happens to be my cousin and creates business ideas daily as a hobby (just like me, it’s in the genes to make money), but she left Logan (4), Xander’s “brother” at home.
Xander is voting for Alissa for President, even though I’ve tried for months to make him say “Obama is my homeboy.”
I feel lucky and completely unworthy to have these “rockstar” friends. Sometimes, I’m really amazed they keep me around and help take care of my family.
I’ve been sick a long time, I don’t have much to offer in the way of a relationship. I’m generally suspicious of people who want to get close to me. I wonder if they’re masochists who are fascinated by my pain and suffering or if they enjoy the drama.
I don’t understand why anybody would get too close to me. I can’t bring much but pain. I have nothing to offer. I’m not the independent girl I used to be. I generally hit up the elderly or other cancer patients as friends.
Keep your space people, even if I do turn on my charming “addictive” personality and force you into enjoying my company.
That’s what I did today. I decided to behave like a little girl and dye my hair bright red before I lost it all. I’ve never dyed my hair in my life. I’m happy with how I’m made.
Lissa walked me through the process. You can enjoy my experiences with me through the pictures. I’ll be losing my hair within the next week. I’m shedding. My hair is thinning. My scalp tingles, but it doesn’t hurt yet. Yes, the process of going bald was not pain free to me.
Baldie’s going bald.
Jenn went home while Colin and Xander occupied themselves.
My hair is now as red as it will get with over-the-counter dye. It’s hard to color black hair.
Then Lissa brought her fun gadget of a camera and let me play with it. I like my toys, but obviously, I’m on a tight budget. I’m a frugal hack. Pretty soon technology will outpace our capabilities as human beings anyway, by then, hopefully, I’ll have cash to play with.
Until then, google has apparently recognized my talents, and I’m considering sharing. I probably won’t, since this may prove I am NOT disabled.
McCain wants to cut me off from Medicare & SSI/SSDI anyway with his plans for $882 billion in cuts. Yes, he wants to leave me high and dry with a taxable insurance plan. Since he’s so generous, he’ll give me $5000 in rebates.
Five-thousand-dollars, maybe he should just come by my house and steal all the food out of my fridge and slap me across the face. That barely covers my deductables and will not cover 10% of my copays.
Pretty shifty from a guy we call “McSame,” who can’t use a computer, and thinks a blackberry is just a fruit.
I voted for McCain 8 years ago. He was good then, he’s old now. What happened to “What the fuck, vote for Huck?” republicans?
Anyway, so with my new hairstyle, we played dress up with my clothes collecting dust in my closet. I won’t be running around showing them off anytime soon.
I won’t be playing “Annabelle,” anymore, the cute, pixie-like, married, 30 year old who jumps into the middle of the dance floor to shake her ass and collects free drinks despite the fact her relationship is “non-negotiable.”
I like having people still try, and I mean people, as in men and women.
I did also say thirty, as in 4 years older than I actually am.
I’m glad I went to confession before my transplant, because some of the things I come up with to amuse myself may send me straight to hell.
Anyway, you can check out my Annabelle dress. The purple one was a recent gift and I’ve never gotten the chance to wear it out. I don’t have a personality, a life, and phone number to go along with this one.
Maybe, I’ll just be Hillary and stop with my social experiments. I can’t think of anyone else I’d rather be right now.
So this is how a young woman copes with her lack of autonomy. I’ve always prided myself on being Miss Independent. I never in my life thought I would depend on others.
This has hit me really hard. If I’m not standing on my own, then what am I doing? I didn’t arrange my life so I would be taken care of, but I am. I always will be.
I’ve never had a problem struggling. It builds character; I just think I have enough character right now. I’m tired. I’d like a break.

2 comments:

Patrick said...

Hi Hillary, my name is Patrick Maxfield and I am from Keene. I heard about you from your uncle Dominic and the Charlestown knights of columbus. I am a cancer survivor myslef. I am 42 now and was diagnosed when I was 39. I had "Hairy Cell Leukemia". I have been reading your blogs and you are an amazing and strong young lady. I wish you all the best with your up coming treatments. If you would care to chat my email is pmax3384@yahoo.com

Take care and god bless.
Patrick

Erica said...

Too bad we won't even see that "generous" credit he's giving us. It goes straight to the insurance thieves. It even says so on McSame's website. If you ever wanna chat you can email me too, it's ericalv2001@yahoo.com I'm usually home and very very bored :( lol and if you have AIM, it's ericachula