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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Saturday, October 11, 2008

My Dirty Little Secret

I’m indulging in another one of my weaknesses: trashy magazines. It’s much safer, and cheaper, than my online shopping indulgences.
I do read real literature, when I feel well. I read social psychology and books on forensics. I read chick lit.
Right now, I’m running out of energy, and I ache. I don’t have motivation for much of anything. There is nothing on TV, and the pain is making me grouchy.
I have pain issues and I don’t like it. I would like to be pain free and not worry about the possibility of addiction. But I’m not. I have cancer. I need to move to heal myself. I’m having trouble finding a balance.
So generally, when I’m in pain, I take a little of my medication, then a little more, and then when I take about 10 mg of my oxycodone, I give up, crawl into bed, hide under the covers, and stop moving.
I would cry if I was alone. Maybe that would make me feel better, but I’m not. I don’t want my mom freaking out and thinking something is wrong. She’s anxious enough as it is.
So I try to tough it out. I take a shower.
I’d like to think I was impervious to drug addiction. There have been genetic studies showing that some people do have a gene that seems to prohibit them from coping with difficulties through drugs or alcohol. These people are generally mellow babies, who live unphased by their surroundings. They are people who can suffer extreme abuse, but who seemingly experience no psychological ramifications.
Maybe I’m one of those people. Probably, I am not. I wrote about drug addiction earlier, but I didn’t post my thoughts. I was still in NH. I worry about what people may do with the knowledge. Somebody has all ready tried to rob my house once. I don’t need those types of problems.
But since I’m feeling particularly courageous today, I’m going to go there. I’m going to take one for the team. I’m going to let my little secret out . Courage is doing what is right despite the possible consequences. So here it goes.
I am a drug addict. I hate admitting this. I don’t want to say it to myself. I definitely don’t want to say it to anybody else.
It was all fun and games when I was treating other people, when I was on the outside looking in. I could see a cancer patient for what they needed to make their lives easier. If they didn’t have other options, pain medicine was always a good choice. It was the least that could be done.
Their biggest problem was not becoming a drug addict. Addiction can be dealt with later. Later after the pain was gone, after the patient was in remission, and if this did not happen, the other option was the patient would be dead. Addiction would never be a problem since the patient would never be without their prescription. They would have a “quality of life” while they were suffering. They would never have to deal with withdrawals.
The gray area of post-treatment addiction was never discussed, not in college, not among colleagues, and certainly not in treatment. I just understood that this was what was done and never questioned what may happen after. The patient just got better and their needs went away. This was all well and good until I became the patient.
When I went into remission the first time my physiological addiction did not go away. I was devastated. My body had betrayed me so much all ready. I kept telling myself I only had a problem if I was deceptive. I would not doctor hop. I would discuss my problem with one person.
I was weaned from the benzos, but I couldn’t admit to the narcotics. I didn’t have a problem, not me, not Hillary, I didn’t want to take those pills. I got my morphine together and weaned myself. I did not wean myself properly.
Withdrawing hurts. Your nerves fire randomly. Any surprise and a shock wave would zap my body. My feet hurt and standing was difficult. My tissues ached and I couldn’t be touched. My skin crawled. I was miserable. I cut myself off and dealt with the pain a while. My problem was gone.
Round two started in July with my clinical trial. I was hurting. Chemo can cause a diffuse ache. I needed to get out of bed. I went to the pharmacy, peaked in the bag, and cursed my nurse practitioner.
“What dumb ass would prescribe motrin for a cancer patient.” I muttered. The bottle was huge. I took it out to check out the label, and found out I was not getting ibuprofen. I was getting vicodins, two hundred of them. Whoa.
I disliked this more than thinking I was being prescribed ibuprofen for cancer pain. I know what my practitioner is thinking and I don’t like it. I don’t want to be that girl. I don’t want to be that patient.
I talked to her after the trial was completed. We decided I should just stay on my narcotics. I only had three weeks until my transplant. It would be useless to wean me and tax my body only to become addicted again. I left with another big script.
I thought this could be fun. I could run around, do what I wanted to do, and pop pills all day. If I knew in high school that at twenty-six I could sit in my big house, eat, play video games all games all day and pop pills in peace I may have been excited, but I’m a grown-up now.
I like the world. I want to contribute to society. I became depressed, devastated actually. I started to summarize myself. I’m a cancer patient. I’m a drug addict. I am that simple. I don’t like it. I was losing site of who I was.
IT became worse when my heart started misbehaving. I couldn’t get rid of the pain in my abdomen. I still can’t. My liver and my spleen hurt. My doctor, a friend who I used to work with, wrote me a script for something different.
I told him I was a drug addict, and he better plan on weaning me after I got better. He didn’t say anything and wrote the script anyway.
I saw the look on his face. I saw the look in his eyes. I hate that look. It’s the “I-feel-so-bad-for-you look.” It’s the “I-want-to-help-you-and-this-is-all-I-can-do” look.
It was fine when the people in Claremont gave me the pity look. I started to get a little nervous when my caretakers at Dartmouth made that face. Now, I get that look at Dana Farber and Brigham and Woman’s.
Try and wipe that look off your face people. I see it and I don’t like it. If you need help, play some poker. Talk to Dr. Schell or Alyea if you know who they are. They have the stone face down.
If you are in my position, you know someone else who is, or maybe in the future, remember my dirty little secret. Sometimes, no matter how hard your mind tries to deny or fix yourself, your body is just not going to listen. It’s pathophysiology.
I’ll let history repeat itself. I’ll take what I need for now, and work out the details later. This was never something I wanted to allow to happen. It just did. I have too many social ties to allow myself to go down the drain. I’ll get treated just like last time. I just think everyone should know that if this could happen to me, it could happen to anyone.


Anonymous said...

hi, Hillary. I'm a KSC graduate who's been following your battles and great successes through Frank Easton, a classmate. I'm one of those who has been rooting for you all along your journey; sharing your ups and downs. So, I'm introducing myself since I know so much about you and you know nothing about me. I'm an RD at John Dempsey Hospital in Farmington, CT. Second career - graduated from KSC with a degree in French Secondary Ed - never taught. Went back to schook in 2000 to do this - what I love and wish I had started during my first attempt at a career! But, then again, if I hadn't gone to KSC - I wouldn't be rooting for you now - so there it is! I also wanted to say that this drug addiction of yours will be surmounted just as you have surmounted your other obstacles - with a great strength of will from deep inside you - and with the support and faith of your "network". That's what we're here for. So, while it may weigh heavy on you - give it up to God for now, and we'll help with the rest. Take care - stay strong. Debbie Downes (

Frank said...

After reading your post Hillary, I was stumped. I didn't know how to tell you what I'm feeling ... but then I read what my friend Deb wrote & she encapsulated it beautifully (no surprise there ... she is an amazing woman herself) ... so the only thing I can add to her post is a standing ovation for your bravery ... candor ... & thoughtful handling of this issue.

From your perspective, I wouldn't blame you for responding that it is easy for me to say don't worry ... take this one step at a time. The truth is I've never faced the challenges you are facing. But I do remember being injured once in Vietnam & getting morphine. I realized with that one injection, just how easy it would be to succumb. So I for one, do not regard you as weak because your body adapts to the drugs. And while the longer term struggle with them isn't easy, they do provide a chance for you to heal ... & that is important.

So I hope you will cut yourself some slack ... you will defeat this beast called cancer ... & then you will defeat the addition ... & you will continue to make me proud!!

So stay strong ... & keep your eye on the prize!!

Anonymous said...

Hi Hillary....I too am a friend of Frank Easton's and don't know how to repond to your "dirty little secret", but can tell you that you have been and are an inspiration to me and to my youngest sister who also has commented on your blog. I think of and pray for you all the time. I love your writing. You are so open, direct and oh so funny. Writing about things at least puts it out there and I'm guessing you've made it safe for OH so may other cancer patients to say....WOW, that's me too!!! I saw my friend Allen (who had leukemia) take more medication than I ever thought was possible and worried that he too was or had become a drug addict...but then thought...who cares, let's deal with that little obstacle didn't change who he was and the fact that he was human... and that's the beauty of it... we are all so very human!!

And OH, by the way...change of may not be black, but you are a "role model" for are a role model for all of us who are sitting by the side lines praying for and rooting (sp) for you.....Hillary, hang in there, and continue to be the amazing role model that you are for Lexi and Zander and for everyone else who knows you and knows and loves you and cares about you........Ellie (just another one of Frank Easton's you can see...he has tons of friends.. ;o)