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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Sunday, October 11, 2009

Summarizing my Stay

At a minimum there is always something amusing about my hospital stays, if not downright funny, and this one is no exception.

Coming in, fighting for breath so hard that I thought my whole body may collapse and give in to the task mechanically was not so funny, but forcing my dad to tape it while I anchored is. . . . . . . special.

When I am determined I am determined and I wanted enough footage to do a PSA (public Service Announcement) commercial regarding why we need reform.

Guess what I got?

Then, prior to any intervention, an admitting clerk came back to get me to sign that I was financially responsible for whatever they were going to do to me.Me curled up in a wheelchair, gasping for breath, only to be stopped by admitting to sign the financial paperwork.

A nurse did come to my rescue seeing I couldn’t breathe.

For all I knew they were going to kick me out the back and have me work it out myself at that point, but I signed none-the-less.

Through my whole ER trip I saw the attending emergency room doctor twice and the admitting clerk after my money three times, and this was an emergent admission for shortness of breath due to a pleural abscess (ie one damn good reason to go to the ER).

It’s all on tape so Linda and her man can now have at it if J has completed his end, transferring the files to a thumb drive and then snail mailing them.

Not that J doesn’t have enough to do being a single father and all when I am in the hospital.

Before my admission X asked me what would happen if I wasn’t around, and I shrugged my shoulders to tell him, not much.

He’d still be dropped off in the morning by a family member, either Nana or Pepere and Meme would pick him up. Daddy would pick him up after school and still coach his sports.

I’ve finally come to a point where I can answer these questions without becoming an emotional wreck. Having me maintain my cool is in X’s best interest.

Life is just not about me here.

Dr. Meehan took over attending on the cancer floor a couple days into my stay, and after deciding on our first day together I was coherent (or so I’m guessing), he brought in a group of twenty or so students.

He warned me in advance there would be a big group. I wasn’t quite expecting that big. Then after he finishes his whole speech to me he looks at me, smiles, then says, “Now teach,” pointing his finger like commanding his pet.

“What?!” I said, shaking my head.

“You know. You remember.” He says, “Like last time.”

Oh no, I do not remember, but slowly it did come back to me, and yes, I did try to commandeer his fellow last spring to teach her using my body.

Last stay, he wasn’t confidant in my teaching methods and had to check everything I was saying for accuracy.

He was confident enough to promote me among the staff that hospitalization to a Nurse Practitioner.

Now, I guess, I’m teaching at Dartmouth as Meehan’s pet. He pointed, said teach, and I did mostly regarding GVHD symptoms post transplant, how they feel, how I cope, and why (GVH has anti-cancer properties that make suffering worthwhile).

Apparently I did what I was supposed to because he left all smiles telling me know they’d actually remember since they had an example.

I have to admit, I liked it. I really miss teaching. I tutored my way through college and was a preceptor as soon as I was hired.

There hasn’t been too many opportunities to teach from my bed except through my writing, without which, I’d go insane.

My alpha caretaker, Dr. Gautier, descended from the clinic that afternoon to discuss the treatment process they were considering and to make me aware Meehan and himself would be consulting Alyea at Dana Farber that afternoon.

I suppose they did since the plan for a biopsy was hatched pretty quickly.

I am impressed by my doctors’ ability to work as a team in my best interest.

I do know that there are other alternate doctors who exist that may choose a different method of treating me, but I am here because I have the ultimate trust that my providers will make decisions based upon their years invested in treating me.

I have seen Dr. Gautier since my diagnosis and I trust him with my life. I trust that if he thinks there is a better option for me elsewhere that he would be candid enough to tell me.

For now, the very best place for me to be is at DHMC, my home clinic, with him and the rest of the team who have been consulting on me for years.

There is a camaraderie and a trust that can not be gained overnight that keeps me here, and I enjoy the comfort of the hometown feel.

October 7, 2009

It is time for me to get up and get moving and yes, I know it’s 10pm.

Lying around and sleeping all night after I’ve been knocked out all day from sedation won’t get me out of here by Fiday will it?

No, now is Super Hillary Training Camp.

I don’t know how many times I’ve breathed a sigh of relief that I was an athelete;and therefore, posess the tenacity and determination to have my body function to a certain capacity in a certain time frame.

Every time I have a setback, it’s training time, with a new goal and a new timeline.

I’m walking around sans any IV pain control. I’m walking and breathing at the same time!

I don’t think I would have gotten up had I not been sucked into watching some cheesy chick movie that has the red-headed woman from Will&Grace in it.

It’s the reverse of Pretty Woman where a woman pays a man to be her date.

I’m still stuck on the Julia Roberts Classic myself, but the movie is worth rejoining the real world for.

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