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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Friday, August 14, 2009

Life is good, even with cancer

I have had pouring night sweats every evening since starting chemo on Monday.

I am talking waterfalls, where-your-wet-suit-to-bed night sweats.

I wish I could say the sweats are just from the stress.

There has been no resolution in our fight with the disability insurance company.

The best resolution: we agree to disagree.

I have officially been “pinked slipped,” fired as a patient.

I will no longer be paid the $566 a month they have sent me religiously since 2006.

But I will not be sending them my social security award letter.

I know if I do this, they will see what I have received for Xander, and go one step lower (I know you didn’t think they could go any lower, but believe me, they can) and try to have us repay what we unknowingly accepted as overpayment.

Really, when I was diagnosed with cancer, when I was fighting for my life and livelihood, while I was worrying about how my son would be careful and we would maintain our family structure in the face of such tragedy, my first question should have been “Am I following all YOUR RULES insurance company?”

This comment isn’t bitter or sarcastic at all.

In my twenty-three year old, na├»ve, save-the-world mentality, I hadn’t yet realized that “insurance” is an oxymoron in capitalism. I hadn’t realized that insurance isn’t actually out to protect me during periods of illness (I know this is the guise we all purchase it under), it is to make profits off those of us too sick to fight.

Silly me.

No, the night sweats are from cancer.

Night sweats are a B symptom of Hodkins.


Lymphomas are staged using numbers 1-4 based on where the nodes are located in the body. Stage one indicates one lymph node region is involved (for example, the right neck).

Stage II indicates involvement of 2 lymph nodes on the same side of the diaphragm (for example, both sides of the neck).

Stage III indicates lymph node involvement on both sides of the diaphragm (for example, groin and armpit).

Stage IV involves the spread of cancer outside the lymph nodes (for example, to bone marrow, lungs, or liver).

My cancer seems to have slipped into that nasty stage four category.

A and B describes whether the patient is symptomatic at the point of diagnosis or treatment.

B symptoms of lymphoma include itching and night sweats. My night sweats are full on torrential down pours accompanied by cold chills. I never know if I have experienced itching as a side effect.

Itching is a terrible side effect, probably designed for the sole reason to make a survivor forever paranoid. Fatigue co-exists with this symptom for the same reason.

A great man did once tell me, “You are not paranoid if your body really is out to get you.”

Would you believe this though?

I am having a great week.

Yes, I am, even with the chemo and all.

I am very fortunate to have many great people who care for me, who want to see me comfortable, and to continue to succeed in accomplishing my dreams and goals despite this hurdle (or hill or mountain, or range, whatever)

I earned FREE make-up and jewelry for throwing the Lia Sophia and Mary K party with the girls last weekend. What a show. Love you ladies.

Monday, chemo day, actually came as a relief, since my cancer had become so invasive I was in extreme discomfort, and of course, I got to go back to my hometown treatment center with the starting line of my lymphoma dreamtime, Dr. G and Anna.

The night sweats are uncomfortable, but I like them. It is a clear sign something is working.

I can also now bend over and touch my toes. My belly is flattening. My pain is somewhat relieved. I am so happy to feel some results.

I also got to see President Obama up close!

Even better, I was quoted in two newspapers addressing the need for health care reform and the necessity of including patients as stakeholders.

I am starting to fear that Patients As Partners, which I hope will be one of my great life’s work, will not see fruition.

I have gone so far with it, I just need to get over the extra hurdle to funding.

My idea is evidenced based and theoretically could ease communication among all sectors of the health care industry thereby expediting processes to be more cost effective and include patient safety.

With my chemo though, I have been dragging.

Please, Katie Who with the experience, get ahold of me via hill.stpierre@gmail.com.

I am currently seeking out formal bids for design of the site.. . . starting next week.

I want this to happen in my lifetime.

Life is still good. You thought the good times would stop, but they haven’t.

A dear friend is letting J, X, and I borrow his condo on the ocean this weekend so we can celebrate our birthdays.

Yes, I said it, our birthdays.

I turn 27 years old on Sunday!

Heather turns 27 years old this day too, and Jon is leading the pack with his birthday on the 17th. He’s turning 31.

We’re celebrating by doing my last couch surfing vacation of the season. I am excited to get some good, quality, three some family time.

3 comments:

Anonymous said...

You go girl ... enjoy the beach ... you deserve it. And I'm proud of you for fighting like you are. Stay strong ... & know that you are never far from my thoughts.
F

Jennie said...

Hillary,
You don't know me but I've been following your story ever since Becky first told us teachers at Maple and you've also been in my prayers since. You have my prayer buddies all over the US praying so Merry Christmas and happy vacation. You are amazing!
Jennie

Sunil said...

Really motivating post, tell the hard story of a girl.

SUNIL


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