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, November 4, 2011

I was at it again. Huffing and puffing and trying to help people out. My latest posting on the huffington Post is: If you're an avid Baldie lover, and I hope many of you are, you've probably seen this before under a different title with a little extras. Ten things I wish I knew when I became sick or ten insider tips to avoiding a medical finacial crisis. I don't know. Trying to remember is hurting my brain. X has been home for the last two days, which I was excited about, because I like to give some extra mothering when I can. I was excited but nervous about this whole fatigue thing. On top of falling asleep from exhaustion, Palliative care put me on a new, more effective, pain regimen monday. They called Tues after I bought, started the new regimen, felt the best I'd felt in forever, then called and said, "no, just kidding, you can't have that. Your skin allergies are to severe even if you felt fabulous. Go back to what you were taking that we decided yesterday did NOT work for you. Oops, and even though you all ready spent your $40 in co-pays you have allowed for pain in a month, go spend another $60 to buy the other stuff that doesn't work. What's another $100 bucks?". It's so frustrating I want to go smash the bottles or throw them as far as I can into the great beyond, but I know if I did that then I'd wake up to addicts sniffing my driveway and all sorts of people with flashlights in the woods. All sorts of happy content people searching through the woods, hopefully. Well either way mom child time went well yesterday and until 1:30 today, when my body revolted. It started with me eating a piece of pizza I KNOW hurts me at 12:15. At 1 I'm getting stomach pains and sweats so x and I rush home. I decide to take the combination of meds I know will heal me pain and usually wakes me up. Usually. Meaning, not for me, no not this time. I fell asleep, which I think made X anxious and upset when the nap went on. He wanted to call everybody to take him/be with him, but nana wasn't in town, Jon, Pat, Dad, and grampa were working and meme had an appt. I know he was worried, maybe, I took to much meds, which I essentially may have. It was not more than prescribed, but maybe more than my little man's psyche to handle. I hate worrying him, and worse, I'm wondering if how I feel isn't a side effect? What if it's a symptom? Severe chronic fatigue could be from treatment or cancer, but generally with the B side effects of lymphoma I can't control where I sleep and don't sleep well at night. It feels like cancer fatigue. I'm getting acid reflux and hiccups again. Ok, it sounds silly, but trust me, this happens. I think it's how a tumor is pushing on my lower esophogial sphincter (the valve between the throat and the stomach) causing it to spasm when I eat or drink. Then I have increased pain, especially in my lungs and hips where I've either had active disease or a lot of fibrosis (scarring). If you thought what you could see outside was bad.... But I have hope and a strong faith that whatever will be will be and that will be the best for all beings. Hmmm, it's a hilliteration (hill's alliteration). Couldn't hold back the geeky writer joke. But then there's the good events, more energy, etc. I'll know results Monday Nov. 7th Everyone, please pray, using whatever words or images in your mind that you like.
Sent from my Verizon Wireless BlackBerry

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