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, November 4, 2009

Learning to Love the Little Things

Good news first, I managed to do a morning of errands sans oxygen!!

Those errands included waking up one sleepy six year old boy with jokes and tickles.

Yes, believe it or not, morning wake up time can be fun.

I think that was probably an accomplishment in its self.

We needed to start the day out right, and laughing until we cried just seemed right.

Except, he did end up really crying after he tried to roll out the door in the sheet I’d wrapped him up in and hit his head on the corner.

Yeah, I guess you had to be there to see the humor in waking a child up by wrapping him up and tickling him through the sheet.

So check, laughter in the Ford household is back.

We’d been giggling, but I couldn’t be active.

I’d get to a certain point, then be unable to breath, and then get depressed.

How can you heal if you can’t even laugh?

I finally dealt with the fact I needed the oxygen tank to breathe if I wanted to walk to the woods to hang out in X’s “fort” or watch him on the trampoline.

Thank goodness I have him. He’s my own personal pulmonary therapist. I wouldn’t have the motivation to resume normal life without him.

I tried to think back to when I was healthy and remember if that woman, that Hillary, would have accepted living with an oxygen tank attached if it meant her child would not be motherless.

And yes, that Hillary would. This one would too.

I think I’m making strides faster now that I’ve come to terms with what my body needs to heal, that it will take a while, but that I will heal if I just keep moving.

So after dropping him off early, because he likes getting to school early (this he must get from Jon), I ran to the store to grab milk.


I really have no idea how I’ve amused you all for so long when the highlight of my life is gaining the ability to walk into a convenience store for milk.

But yes, it’s a good day, because I’m able to go grab milk sans oxygen like an independent adult.

I’m able to meet my own needs in small ways.

Look people, to get as far as I have you have to learn to love little things.

No, I didn’t run a marathon, single handedly reform health care, or become president, but I have dragged myself out of bed to heal from another terrible threat to my life.

FYI-AJ, who I mentioned earlier, has hodgkins. She does not have a site. She moved from diagnosis to resistance to marrow transplant quickly. Hopefully, this is just a year long blip in her life. If she ever wants to write, she knows she can.

I’d actually, officially, like to give the hottest baldie award to her. Even sick, she is one FINE young lady.

I’m moving on from my crisis, slowly but surely.

I couldn’t quite bring myself to exploit myself for Health Information Emerging Technology.

That is what I do really: I exploit the horror of my situation in hopes that it motivates people to protect people who innocently contract these terrible diseases.

I never did anything to bring this upon myself, but here I am.

I could be your mother, sister, wife or daughter.

Emotionally, I just wasn’t in a place where I could flaunt my illness in hopes of inciting change.

It’s not right for everybody. It welcomes judgments that are often hurtful in a time when you are most vulnerable.

Not being able to breathe is the scariest, most terrifying, health issue I have ever faced.

It is absolutely devastating when your body denies you that simple exchange of oxygen for air.

I’d gasp for breath. I’d break into a cold sweat. My body would start to get weak. I’d lose control of my functions.

Then I’d just pray that I’d get my breath back.

My eyes would cry, and I’d hope that everything would not go black.

It didn’t.

It’s hard to want anything worldly when you’ve been denied the ability to breathe over and over for months.

How do you really feel like shopping after that, especially knowing that any minute, anytime, it could just happen again?

You don’t.

Most things worldy just seem petty and uninteresting.

What does spark my interest, and I’m so lucky to have it, is my family.

Sometimes I wonder, if I hadn’t lived my life so early, if we hadn’t had our son, built our house, and got married by 22years old, where exactly would I be today?

Would I still be living with my parents?

I haven’t quite had time since chemo, transplants, radiation to accomplish these major life events.

It’s hard to commit to a house or relationship when you know your ability to participate is limited.

I’m finally, emotionally, coming around. I’m dragging myself out of my grieving. I’m going to spend the night at Heather’s to see my new nephew before I FINALLY get back to Boston and Dana Farber tomorrow for a much needed planning appointment.

Cross your fingers, toes, legs, whatever and hope I can get my donor lymphocyte infusion quickly, and hopefully, without anymore chemotherapy.

Apparently, my body didn’t seem to take the chemotherapy to well, but neither did the cancer.

The hope is it’s still gone, and it can stay gone until I can get this next infusion.

Say those prayers.


linda keenan said...

hillary - one of my oldest friends is one of the top pulmonologists in the country - at the brigham and knows many of the folks at DF etc. if you feel like you need more pulmonary guidance, let me know.
xo - linda

Blissfully Bald said...

Ok Hillary, you've talked me into it. What better time to start a blog then while I'm laying in a hospital for two weeks?? So here it is Hope all is well, I'm holding down the fort here at dhmc and doing just fine. Be happy. :)