Time for an update: I'm still flat on my ass. I haven't been able to sit at a chair yet. I'm weak but gaining strength! I can now eat. Digestion is slowed, but I still lose most through loose stools hours afterwards. I think I'm getting nutrients. Drinking lots. I'm eating healthy and cautiously: fruit, veggies, nuts. Carbs and sugars don't treat me well, but I feel like I'm on the upswing. I've been out at appt. Tues. And weds. Tues. I saw Dr. G which assured me that my cancer is slow growing and I need to heal before starting the revlomid which will drop my counts. I've filled out all sorts of financial aid too for the $1000+ a pop medicine. Weds. I saw endorcine who I love. These are the people who will get me off prednisone!! I got to 7.5 mg and stopped, thinking no adrenals means steroids forever. Not so. Today is the first day of full rest, though when J comes home I just fall asleep. Today J has a colonoscopy and he'll still coach Lex and the 5th and 6th graders tonight. When it rains it pours. X has had his kidney infection but went to school yesterday. Tomorrow he has an ultrasound of his kidneys. Hopefully these infx are a fluke. I'm seeing urology sometime around next Tues when I see anna next. I'm getting the stent removed and replaced because it's time. Chemo Revlomid may come in by the end of the week. Then I'll have weekly checks at DHMC for my blood counts until I can switch to a trial medication in NY in Feb. that has less side effects. The cancer growing slowly, thank goodness. This way I can regain my strength, heal my GVHD, Gut, and addison's, then go back to kicking cancer's ass. Thank you, everybody, for your love and support. When I become this ill, it's hard to see beyond my toes. I can't even run off adrenaline, bc my adrenals are fried. I get tunnel vision and try to focus on the task at hand, one step at a time, one moment at a time. People say take the struggles day by day, but take it as slow as you need, second by second, whatever it takes.
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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."