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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Sunday, November 2, 2008

I'm losing it. . .

Weight- Probably dropping, Daily Meds-24, Pain meds-Imitrex! Good Bye Migraine, 20 mg, Temp- 100.2, 99.9 & 100.1 liquid, 1 cp. Coffee, 4 cups of tea, 6 glasses H2O Food- 6 honey buns (It’s a cancer patient craving. I can’t get enough. It’s better than the slim jims I ate by the box or the tubs of Kentucky Fried Chicken).Exercise- 45 minute walk in the woods
I’m losing it. . . . my hair that is, but I would not stop and say my hair is all I’m losing. My hair is thinning, and my psyche calls for a pre-emptive strike. My mind is like the US government when it meets threats, they need to be “taken care of” by all means necessary.
Xander says, and I’ll quote, “Your balding and everyone can see it.”
Except, lucky me, I have exceptionally thick hair. J would like the hair on my head for another week. He can’t tell if my hair is thinning. I’m telling him it is, but it wouldn’t be the first time I said something and convinced his brain of what his eyes don’t see. He’s on to me.
I understand where he is coming from.
We’ll call it denial. I think the human mind has the capacity to miss evidence your eyes can physically see when you don’t want to admit a truth to yourself. You will only see what you want to.
I’m hoping he sees the beautiful, energetic, naively innocent and strong woman he married. I’m sure he sees a woman whose muscles have atrophied, who is dependent, and is not holding up her end of the deal. The evidence doesn’t lie.
For this reason, we work really well over the phone.
Here’s a little secret for you all, I have a meticulously cultivated exterior. I like my style; however, it’s not entirely mine. How I look is more important to J than me. If he sees me, he’ll inevitably call the shots on how I look.
Since (here’s the shocker) I don’t care, it’s not a problem. I understand, I reflect him and his lifestyle. I’m his “trophy” and have no problem behaving as such when we’re among his people.
If my clothes cost over $20, J has approved them or bought them himself. I kind of like it.
My hair, however, is not his call. He’s behaving like it is. He’s behaving like I have control over this side effect and I’m choosing to defy his wishes. It is making doing what I want and need to make me comfortable and happy difficult. Who doesn’t want to keep their man happy?
I think Nic, Brynn, X, and I will be having a shaving fiesta when they come over later. We’ll get it on video for the masses.
I think J’s reaction is probably normal for a man who has held it down for so long, being as sick as he is himself. For all you who don’t know or may have forgotten, J had surgery over the summer for Crohn’s, a severely painful irritable bowel disease that had caused diffuse scarring.
I can not take care of his health care along with mine. I introduced him to his doctors. He’s being taken care of by the best. His previous doctor in Claremont was a co-worker, who I enjoyed. I’m sure he made accurate recommendations to his current doctor, who I think is fabulous, and his surgeon, who is extremely talented.
Unfortunately, it doesn’t matter what a great team of professionals I’ve provided if he doesn’t take their recommendations (or medications). They are not mind readers. I haven’t found a med school that offers that class. They don’t know he is suffering.
We’ll talk and I’ll spin up a magic health care plan for him that I can put into action next week. When he first became ill, I scoured the medical journals and the internet and let him know his options.
He opted for an alternative treatment that is used in Europe. I tracked down the American gastroenterologist who devised the theory of using TSO, a natural component found in the earth, present in the third world diet, but no longer present in ours. He actually responded. I would have gotten J treated with whatever he wanted, despite the out of pocket cost, then I got cancer.
Thankfully, I’ve been incredibly anxious (PTSD?) or I have ADD (and no, thank you, I would not like them treated right now). My mind is constantly running. If TSO is where he wants to go, I calling Dr. S and sending a check so it can all be arranged without me.
My mind is Running. . . Running. . . Running.
Bless this flaw, I can be relatively productive. If I didn’t have this problem, I would just sleep. I think I’m going to use these “problems” to my advantage now.
I don’t mind the mood swings, the tears, the terrible memories, the unfortunate understanding of my health care providers and the system. I would not want to medicate these away.
If I did, how would I open my heart and tell all you listening how I truly feel? I don’t know if any one else will ever step up and expose their innermost thoughts and fears to strangers without worrying what will be thought later or how they will be judged.
What I tell you daily is what I feel, without sugar coating. I type as I think. If you read my writing you are essentially reading my mind.
I can do this because I have a deep seeded fear that I will not survive so the future judgments are null and void. I understand the basic needs of humanity, which I believe transcends nature, nurture, and culture. Im reaching out to alleviate the fears of humanity, by showing my world from the inside out.
I hope you enjoy reading me, since reading me is essentially knowing me. You all know me, Intimately!
I like it. I like your constructive criticism and your arguments against my views. I think I am perfectly imperfect, exactly how I want to be. I especially like your compliments. I talk them to heart. I’m smiling as I think about this.
Try to keep this in mind as a you read me, and maybe, sometime try to live YOUR life like an open book, it is, surprisingly, validating.

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