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, August 4, 2009

Intimidation






I am intimidated.

This is a feeling I don’t get often.

Actually, the last time I think I felt it was when I was a junior in high school and my best friend was introducing me to all her cute college boyfriends.

Damn, we’re the cute.

And I was so uncool.

I wish that I was the intimidation I am facing today.

Actually, I remember another example of intimidation, I was sitting in the lobby of Dana Farber when a huge group of black suits and ear pieces swarmed the lobby.

Then in walked none other than Sen. Ted Kennedy.

He quickly walked by, smiling, to the appointment on his agenda, but a fierce number of black suits stayed behind in the lobby.

It was then I noticed a pretty woman with gorgeous reddish hair looking like she came out of an L.L.Bean catolog, down to earth and comfortable.


It took me a second through my haze to realize THAT was Caroline, one of my personal political heroes, Caroline Kennedy

I was so sick that day I couldn’t move my body. Turning to speak to her would have given me gut wrenching pain.

It was just the two of us, and she was wondering, nonchalantly around me like she hope to talk.

I just wanted to give her m carad.

I just couldn’t get up the courage.

I was intimidated.

That is how I felt today, but not from any person.

I am intimidated of the upcoming regimen that though I have been told is only “mildly uncomfortable” will set me back a week” and I “will suffer neutropenic hospitalizations.”

Those are in-patients stays due to a lack of an immune system for my safety.

I’m happy to be back in the caring, optimistic hands of Anna and Dr. Gautier.

Maybe I am paranoid, but I was a little concerned I was being sent home to die.

Well, not die exactly, but prolong life while spending time with the family undergoing a therapy with no hope of working.

I choked out the question to ask why I had returned to them to answer this.

I was told this happens sometimes and since I had been treated by two Doctor/NP teams in the past that Dr. Alyea allowed them to make the decision.

Anna snatched me up.

Awwww, Anna. That makes me smile. It feels good to be wanted. Someone, please give this women NP of the year.

I was given the option to start my chemotherapy any day, and I chose Monday.

Monday is a clinic day at DHMC. It’s also a very popular choice to receive infusions by cancer patients.

This way our chemotherapy is like a job. We can be sick during the 5 days every one is working.

I now need to find a ride for every Monday appointment.

If anybody is available please call, email, or blog a comment.

In all honesty, I shouldn’t have been driving today. I can’t keep my eyes open. I’m falling asleep doing everything, but I wasn’t going to tell them that.

I am also going to remain on 5mg of prednisone to combat the “b side effects” of my Hodgkin’s Lymphoma. “B side effects” are fever, chills, sweating, itching, etc.

All these little symptoms that make you uncomfortable and life not so easy to live.

Unfortunately, or fortunately, I don’t know which, these two have the capacity to make me cry.

If you were worried, you can feel comfortable that I am being holistically treated.

Don’t get me wrong, I have spent teary nights in the privacy of my own home, but I keep them to a minimum.

I try to stay busy and distract myself.

Again, with my disease progressing so rapidly, I am re-evaluating what I can do to bide my time.

Writing, reading, and art is high on the list.

However, my priorities, as always, are my health, and then Xander.

I am scared and intimidated that we will have an issue with a babysitter again this year during a period when X doesn’t need any disruption.

Good help is so hard to find.

I know this is a long standing complaint of working mothers. We were so lucky that we had Jean until he went to kindergarten.

She will take him back sometimes if we are in a pinch, but replacing her is impossible. It’d be like replacing a grandmother.

I can’t believe we are finding ourselves in this same exact position as we were last year.

This year, the stakes are higher.

Luckily, Mrs. Thurber (or Brenda), Xander’s upcoming first grade teacher, suggested we get Xander and her kids together for a swim date before school.

This was he can acclimate himself to her ass a person.

She is the teaching professional, so I’m going with that.

As for daycare, we will keep our fingers crossed and pray for the right fit.

Maybe we’ll put the nanny back on the table, who knows?

At least I will get to be present during this time, whereas last year I was not.

I am so happy that Dr. G and Anna were able to accommodate me in the schedule, just being home, being close, and knowing my loved ones are near, as eased a significant burden

PS: I tried to get a video of my most recent PET scan and my request was REFUSED by Dr. Gautier.

If anyone would have liked to see the scan, point the finger here, but I h

ad to agree with his logic, he didn’t want a bad scan posted to start. He wanted to start with only good things.

He likes to keep things optimistic. I’m glad


I am in the company of a thinker like that, but my bloating abdomen making me look pregnant, are probably tumors. I am not four months along with an alien.

1 comment:

Emilee Minckler said...

Hil,
I work up there and have to be to work everyday for 7:30 so if you ever need a ride let me know. I have no problem bringing you.
603-542-9023 home phone
603-504-5051 cell