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, November 5, 2008

The Development of Preconceived Notions and their relationship with Coping

**WARNING*** This posting is graphic and deals with my past experiences that have made coping with my disease extremely difficult. My stories are true (Do you really think I can make this stuff up?). If you're concerned about the content, please do not continue to read this.
I am doing well. Yes, I feel good today. As far as complaints go, I have them , but none that are life threatening. This, too me, qualifies as pretty damn good day.
Surprise, I’m happy today too.
Thank you Oprah for helping me understand why I have lost my joie de vive recently.
She says it’s all in the hormones.
Low testosterone levels can lead to depression.
Several years ago, in an attempt to find the female Viagra, a testosterone patch for woman was developed. It never made it through the FDA (nothing really does, if Tylenol were being pushed through the FDA today it would never make it to the market due to the high incidence of over dose and liver failure.) The idea, however, that hormones may be the key to our happiness, is still thriving.
I’m still confused, however, how a panel of “good old boys” turned down testosterone patches.
I’ve always been anti-hormones. I don’t like to mess with a well functioning system. I don’t fix what isn’t broken.
Thankfully, I won’t be taking them anymore. I’ve evolved out of those medications. The last one is due to wear off Nov. 7th, then hopefully, I’ll feel more like myself.
I’m happy, because day by day, I’m feeling a little more like me, and I was told I looked like a celebrity yesterday by the boys from one of my favorite practices in Claremont.
I look gorgeous, like Natalie Portman, was what I was told.
I really studied his face on this one, searching for those vital clues that he was lying to make me feel better. I didn’t find them, and in general, they’re genuine and honest guys.
I am not currently seeing what they apparently do.
I’ll take it though. I like it. I look like Natalie Portman.
I’ve been told this before, by a very attractive, tall, thin, blond woman in a mini dress, but she was very drunk.
She slurred out her compliment as I walked away, “ Heeey GOOORGEOUS. You knooowwww, youuu look like aaa Angeeelina Jooolie, Naaatalieee Poorrrtman, Keeeiiraa Kknniightly mix!” she hollered at my back.
That made me smile too. Flattery will get you everywhere.
I also convinced X that matching socks was a game, like go fish, this morning, and he needed to match them as quickly as possible to beat me.
Our socks are all matched.
Yes, I do psychological experiments on my son. I think they’re hysterical. My dad did them to me. Freud and Piaget did them to their children.
He didn’t know the word “no” existed until he was three. I wanted to skip the phase where the child says “no” to everything and simply did not introduce it into his vocabulary.
I enjoy gathering information about the development of the psyche. I do not currently enjoy the state of my brain.
I have attention deficit. I can’t stick to a subject. I’m sure you’ve noticed. That is why I’m here typing now, and have been, to educate everybody on what happens to my body.
My failing mind is devastating. I know I can get it back. I’ve done it before. I could medicate myself. Altering my mental status permanently through treatment is a line I will never cross. It’s a deal breaker. I don’t want to be a shell of who I am, without how I think, my essence is gone and I will no longer be here as me. I’ll make my body follow.
Some of this can be attributed to the chemo. Some can be attributed to stress.
I live with deep seeded fears from my past experiences.
I wish past experiences and impressions of diseases were discussed on intake with the health care team. It is a huge clue into the fear the person is experiencing. These experiences are the jumping point for all patient’s assumptions, whether or not they have been educated with numbers and science.
Numbers and science will allow patients to intellectualize and attempt to control their disease. It is beneficial, but without understanding and encoding the past, no one will understand the nagging thoughts, the cause of tears, the anxiety, or the nightmares these patients are experiencing.
Knowing these factors is as simple as asking, “What experiences have you had with this disease previously?”
My answer would be, “I’ve never met anyone who has ever survived a bone marrow transplant. Everybody I have ever personally known with a blood cancer has died.”
Maybe then they would understand that I was scared to death and no matter how hard I try, I can’t keep these experiences from creeping into my mind.
I don’t think any other patient can either.
I have a terrible methotrexate story that escapes my mouth like I’m possessed. I feel like, if I continue to tell this story, maybe it will go away. It should become the problem of who ever hears it. I’d gotten it out of my mind for a long time, but since this was on my list of cancer cocktails, it all came tumblild sung back.
Methotrexate can cause, as a side effect, an instant abortion. When I worked at hospital X (we’ll protect the guilty), there was a doctor having an affair with a nurse who became pregnant.
He, obviously, didn’t want his wife to know. He didn’t want to pay for a child by a “baby’s momma.” I’m sure he didn’t want to part with his cash in a divorce settlement, alimony, and child to his ex.
A specialist friend of mine was paying his baby’s momma $5000 a month in support. Damn. I think most of us can see where this is going.
So the man walked up the woman in the ER and stabbed her with a needle full of methotrexate, causing an abortion.
He lost his license, clearly.
WHOA. I’ve seen this. I know this. It haunts me, and now, I’ll be infusing that drug directly into my heart.
Sweet, let’s get this moving (sarcasm).
This isn’t what is currently causing my anxiety. My anxiety is caused by one of my last experiences as a nurse.
The ICU was empty, but I was still at the hospital. The hospital required the presence of a certified ICU nurse at all times, whether or not there were critical patients.
I decided to take this opportunity to check out the ER. I liked the ER and its pace. I wanted to see how it worked in NH.
It was better than sitting around, obsessing, about the masses in my neck I couldn’t keep my fingers away from, or my fevers, or the night sweats.
Two woman got out, dragging a man who was desperately trying to walk.
Everybody flew out of their chairs and got the man to the “crash bed.”
He was pale, he was gasping for breath. He smelled of something sweet and sick.
I still remember the smell. It’s the smell of blood and cancer.
“He has CLL.” The woman said, her voice was panicked, but the pace of her speech was normal. It was amazing the dichotomy of her pitch and her slow, steady words.
“We were coming up north for vacation. He was driving. He was fine. Then he said he didn’t feel well. We came here. Is he going to be okay?”
Another nurse took the women away to get their history.
He was okay earlier. . . I still hear her. It’s terrible.
I ran to hook this man up to our monitors quickly, and conned the surgeon walking through to throw in a central line in while I assisted.
Afterwards, I stood where I belonged, beside the patient, in between the crash cart and the paddles, in direct sight of the monitors.
His breathing was getting shallow. He was getting paler. He was sweating more profusely. His heart rate was rising. His blood pressure was dropping.
Suddenly, his bowels exploded. I took samples and started testing.
Blood. All blood. Pints and pints that would need to be replaced immediately if he was going to survive.
I was told to leave the ER and prepare his room in the ICU. I left and paced.
“I don’t want this patient. I don’t want this patient all by myself. He’s going to die. I’ve never had a patient die on my time. .. “ I kept going on like this in my mind pacing back and forth.
I was twenty-two years old. While I was pacing and muttering, I was rubbing the tumor in my neck, unconsciously. I rubbed it until it was raw and red.
I couldn’t keep my hand away. Rubbing, rubbing, rubbing, like if I just touched it enough I could smooth it out. The mass would disappear.
I heard the family “CLL. . . .driving to vacation. . . .fine this morning”
I remembered the patient and conversation with Dr. X, who was on call, “Major bleed. . . not going to survive. . . .”
I liked Dr X., or Dr. Death, as I so lovingly started to call him after my diagnosis.
“He’s going to die, either in the ER or in here. He has CLL, and there is nothing that can be done for him” he explained to me like he was teaching something as inane as ordering dinner.
“I’m transferring him to you. You run what you can do by yourself with the guidance of the response team.”
Translation: Do not take extreme measures, no asking for help, make this man comfortable, and he’ll die peacefully of natural causes like he is meant to. His suffering will be over and we’ll have followed standard guidelines.
The patient coded in the ER. I did my job. I did what was in the best interest of the patient and the family. I ran the meds. I followed protocol.
I did not kill anyone, not even close.
This is a common misconception and fear among patients and family members. Doctors and nurses don’t “kill” cancer patients.
They provide needed dosing, such as with morphine, in accordance with the patient’s tolerance and pain level. Most time specialists from “palliative care” are called in to help control pain.
The doses may be lethal to you, but they are not lethal to the patient.
I know this story may cause some fear and ambivalence among people. This is not a story meant to instill fear in anybody. It’s a story that I hope will help promote acceptance of disease and disease processes, but this can only happen when a person has suffered as much as they can take and further suffering would be purposeless.
Now, four years later, I remember this lesson. This experience was not the first time I’d practiced this method. I was providing care. I was doing what was right and in accordance with nature.
I cry looking back at this. I cry because this man was fine in the morning. He was living a normal, healthy life. He was on vacation, and WHAMO, hours later he is dead.
This makes me feel unsafe. It reminds me of what a fragile state life really is. I know this could happen to me.
I also, now, have a whole different perspective on the situation. I see the other side.
I wonder, “If this time comes for me, will I have a Dr. X to call these shots for me or will I continue to be dragged through care because someone can’t let go?”
The real Dr. X tried to refer to me as “the patient” as soon as I was diagnosed, but he was constantly reminded by our co-workers, that I was still Hillary, the Hillary he had invested his time into teaching to be a great provider.
I hope he can keep the perspective he has with his other patients with me. I’m sure he will be able to. I know he will be called if my time ever comes.
I’m blessed to have met this man and learned some of his lessons. I am a very fortunate woman, that he felt me worthy of investing his time and intelligence in making me a better person.
As I stated earlier, I am happy. I am happy that I can see the world in 3-D from both sides of the spectrum and understand. Everything I’ve ever experienced has made me whole, and this is priceless.

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