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, March 11, 2009

Rip Van Hillary

I just came back from a “quick” run to the grocery store to pick up “a couple” essential items: bread, deli turkey, juice, etc.

My essentials cost me $98!!!

Boy, do I feel a little like Rip Van Winkle.

It is one thing to see the news about inflation on tv.

It is another to physically go grocery shopping after being in isolation since July 2008 to realize EVERYTHING THEY SAID WAS TRUE!

I almost want to crawl back into my bed and hide until this recession is over.

I know several of my providers just WISH I would instead of insisting on testing the limits like a two year old.

If I knew how hard it would be to pull out my debit card just to pay for groceries, I may have officially declared myself a hermit.

Just call me Rip Van Hillary, and it’s only been 6.5 months!

I even went to rent movies since I was sure that wouldn’t be a problem.

It was almost $10 for two new rentals! At least I get older releases free.

I did have to get out of my house. I have a whole new understanding of cabin fever.

I’ve had these uncontrollable thoughts and plans to do something fun, like a vacation, for a week now.

A week ago, Jon had his colonoscopy. A week ago, I also turned down a free trip to Miami in May since flying is on my list of restrictions until next October.

A special exception will be made for travel necessary for medical purposes. “Medical purposes” do not include an overwhelming desire to get far, far away from the snow and hit the beach.

It’s estimated 80% of air on a plane is recycled.

It’s the infection equivalent breathing into each other’s mouths.

I wish this is just something I read.

How I learned this was worse: it came from my HUSBAND.

I hear he knows something about aerospace engineering and is quite convincing when denying my escape ideas.

Now, I’ve started plotting my trip to Boston for St.Patrick’s Day.

I’ll come to my senses about this too.

The same way I controlled myself from running to Burlington for their Mardi Gras celebration and to see the student protests at UVM.

These plans were downgraded from going to Savannah when DF told me, “Oops, one hundred days really means nothing with an allogenic transplant. You’re under wraps until April (From MC) or June (From TA).

During my grocery shopping outing, I was doing a little math. Asian pears at the super market are $2.25 a piece, mangos are $1.50 and they only have the greenish/red kinds. This market did not even have plaintains. Gelato is outrageous.

It would be cheaper for me to email my friends from college, asking them to bring my favorite ingredients from neighborhoods, load my family into the car, and hang out in NY for the weekend.

I’d rather have asian pears from Rego Park, gelato from vendors off Fordham Rd., and mangos from a bodega.

I’m pretty sure these are where the fruit lands in the US originally anyway.

I could probably do this once a month for what I pay the middleman in grocery money, even with coupons.

This sounds way more fun than the grocery store.

Yanellie, my BF from college, and I decided during Thanksgiving in 2007 that Thanksgivings would be done in NH and Easters would be done in NY as part of our family sharing agreement.

We didn’t even need to get any lawyers involved to settle this.

Now, if I can only get permission. . . .

I am seeing Melissa tomorrow.

Yes, tomorrow is appointment day.

I’ll be in Boston for 10 am and will not finish until 3 pm, which is hopefully enough time to run to the technical college for 6pm.

I will be tired, sick, medicated, and grouchy, but isn’t that the point?

Would speaking out really be as effective if I only showed myself during the good times?

I’m pretty confident if I did that it may lend to the misconception that cancer is not as horrible as it sounds.

I do always rejoice in the reaction from people who have never seen or met me, but have read portions of my 5lb. + medical record.

Their reactions go a little something like this, “Hello, Ms. St.Pierre (nose in the chart, trying to catch up on all the important details before we start our discussion. Then, eyes lift up) Oh, hi (startled, shocked, surprised, confused).”

I generally intervene here, but I can only imagine the automatic questions going through their minds:

THIS is the patient? The one that has undergone two transplants? The one that has had treatment with no more than a 3 month break for the past 3 years?

They clearly have a very different visual of me in their head. There is an extreme difference in what their imagination is seeing from the reports and what they see when I present in front of them.

I do love surprising people. I always have.

Then eventually, when they’ve relaxed a little, are letting their guard down, have confirmed I am who I say I am and have gone through what the chart says I have, sometimes I hear a “Well, you look. . .(pause to find the right word). . GREAT.”

Very amusing hearing this word “great” from people who have dedicated years of their lives to educating themselves on the human body.

I take it as a compliment.

Hopefully I’ll hear it tomorrow from three different providers.

Maybe, I’ll hear it tomorrow night too if anybody can imagine how I look underneath my mask.

Then, hopefully, fingers crossed, sometime, SOON after that, I’ll hear it from friends in NY.

1 comment:

Anonymous said...

Our thoughts & best wishes go with you Hill ... I'll be holding onto my healing fetish all day.