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, December 29, 2009

Fa-la-la-la family

It’s been fa-la-la-la family time since Friday.

Please, no worries, erase those visions of hospitals beds dancing in your heads.

I managed to stay at home for the holidays through the divine intervention of steroids.

Spending another Christmas in the hospital or isolated was too much for my poo

r psyche to bear, especially with as ill as I was feeling.

All I wanted was to be able to enjoy the holiday, especially since the past 5 months have been so difficult.

It’s clear no more holidays are promised.

I’ve walked the line of death many times before. The onset of problems usually came on swiftly and in a manner that I could either choose to accept or fight.

I had never before had a debilitating problem languish and consume me to the point that death looked like a relief.

I’ve never before realized how fragile life is, and the knowledge that mine remains over my decisions to take or not take a series of pills is something interesting to fathom.

It’s also liberating to know that I do have some control. I can decide my fate to a point.

But not yet.

Now, I’ve been walking back and forth from the car to and fro family’s houses just because I can.

I went to Walmart with my sister just to wander since I can now walk.

I can now cater to Xander without wondering if getting him spaghetti-o’s will send me gasping for breath.

I don’t have to remind myself to breathe in the nose and out the mouth, putting one small step in front of the other to try to manever the easiest tasks.

Yes, these are the thoughts that consumed me. I couldn’t move without reminding myself to breath.

The very essense of life, my breath, now had to be monitored. I started to be consumed by how much intervention and monitoring I would accept on behalf of my body anymore.

It’s amazing the small obstacles that can hold even the most resilent person back.

Mine was mostly the fact that my oxygen tanks are ten pounds and hang over one shoulder, far too heavy for me to manage for any sort of outing without a wheelchair or person to assist me.

I asked for the 6 lb canister, but a well meaning tech filibustered me into accepting the tens “in my best interest.”

He talked so long and so fast regarding his logic that I had to take a nap after he finished, giving in to his suggestions, even though he had never met me and had no idea I’d lost most my muscle mass from months in the hospital.


Anonymous said...

Hey was so nice to run into you and your sister yesterday..You two are so cute together. I am glad the steroids are helping....I do check up on you every couple of days. Have you seen Avatar? Don't worry about seeing it on is awesome..on a regular movie..I think you would like it. warm hugs..Deb W.

Anonymous said...

Like many of my friends, I've watched your Blog & seeing nothing since the day before Christmas, made me wonder how you were doing. So it was quite the belated Christmas present to see the new posts although I wish that things were better than they are.

It isn't my place or anyone else's to tell you how you should live your life Hillary ... what treatments you should or should not take. In the end, there is only 1 vote that counts ... yours.

So while I will continue to hope that you find the strength to battle this horrible disease (I along with many others, would hate to lose you) ... I will always try to respect that you are only one who can make the decision of when is enough enough.

Just know that I care about you & that you are in my thoughts.


PS: Sorry I wasn't able to make the Quechee trip ... but the flu put the kibosh on that.

linda keenan said...

and a happy new year, hillary and family. i realize i still have to pop an sase to you in the mail. ill do it tomorrow.
XO! - linda keenan and a few of my hillary fans