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."

Get a playlist! Standalone player Get Ringtones

Friday, November 14, 2008

Getting Diagnosed

I’m a shit creek survivor. I’ve been up the river without a paddle, and here I am now.
I have the t-shirt to prove it. Thanks Craig for finding it.
I was thinking yesterday about what it felt like to be diagnosed. I try not to think about it, but I will so you know what it’s like.
My story is probably different than most.
I suspected I had cancer in Dec. 2005 despite a perfect CBC and a clean Chest X-ray.
I was scared enough I expanded my insurances in January 2006 “just in case.” I got short-term, long-term, and life insurance. I increased my life insurance.
Who doesn’t want to have a twenty-three year old non-smoker, social drinker, athlete under their insurance policy?
I knew, I was the bread winner, if anything happened I still had a family to provide for.
We all know how much good that did me.
I’m sure my husband remembers the discussions about where I wanted to be financially because “what if” I was sick.
I started talking to my doctors in January. I wanted to be diagnosed as a patient.
I didn’t feel I was being taken seriously.
Now, looking back, my doctors were my friends. I think they respected my opinion, but they also knew, if I was worried and wanted the answer, I would all ready have it.
They would show up in the ICU and I would tell them. Yes, my doctors would come to me.
I didn’t really want to know.
I did have a friend do a CBCthat looked “suspicious,” or it looked like cancer and I was in denial.
I was headed for vacation.
I did push the issue when I came home, only to disagree with one of my providers.
It was the first time I realized that what a doctor will say to a patient is entirely different from what they’ll say on the consult sheet to the other doctor.
I told the Doc taking care of me how angry I was before he got the consult sheet. He didn’t look surprised, because he’s that good at hiding his emotions.
He showed me the note later to calm me down.
I was glad I had cancer after how I spoke to the doctor I disagreed with. I still feel guilty. He’s talented and well respected. I’m sure he has never again heard, “I didn’t come to a surgeon for his medical opinion.”
I saw a different surgeon after my vacation, one of my favorites, who luckily is an ENT. The results of the CBC he ordered were worse than in Jan. WBC 15,000 RBC 3. I stopped looking. I looked sick, but I didn’t feel sick. I would have been okay if I was laid out in bed with some monster infection.
I felt fine. That is so much scarier.
My friend R coaxed me into reading my CT scan. He had no idea what I was looking for. He had no idea I was procrastinating and didn’t want to see. He certainly didn’t think I’d be diagnosed with cancer.
I peeked. I heard the radiologist report. “Marked mediastinal lymphadenopathy. Left pleural infiltrate”
I hung up. DAMMIT. My PCP walked in. I gave him the phone and left to take care of my patients.
“It could be something else Hill.” He wrapped his arms around my shoulders and told me. “You could have a virus or sarcoidosis.”
Great, that’s the best option. I knew it wasn’t. I knew he was trying to make me feel better. We both did.
I cried all day, but only told R. The other nurses were pointing fingers and accusing each other of hurting me feelings and making me cry. No ladies, you all are great.
After that, my other doc kept showing up every where. He told me he wasn’t worried. He told me I had a “benignancy,” and that it’d be worked out in 6 months.
I had a 6 month emergency fund saved. I’d be fine. Or so I thought.
I’ve seen him since and he just shook his head and told me “It wasn’t supposed to end up like this.”
He’s a prominent oncologist. I knew he was incredibly smart and successful. I love the lessons he taught me. I still ran away when he tried to find me. I didn’t want to talk about it.
How many patients actually have a doctor that finds them, and what do I do, I run away and hide.
He immediately tried to start referring to me as “the patient” even though nobody would let him form that boundary with me.
Not Hillary, the little ICU/ER nurse, the educated one who left and came back to work in Claremont. That never happens, we all know DHMC snatches the talent.
I had my biopsy a week later and left work immediately to spend some time with my family, specifically my son, who I spent the next month running around with in Boston, NY, or where ever I felt like going to get away.

No comments: