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, April 20, 2011

Sleep Stress

I slept half sitting up, hand on my face, leaning on my elbow last night.

 I woke every hour and forced myself to sleep normally only to wake up the next hour in the same position. 

I woke up at 5 and moved to the couch.

 I was anxious about everything I always am, plus the blood in my urine (gross hematuria) that started Thurs. night prior to my discharge and has been increasing.

 I don't feel like I'm being taken seriously about this. 

Actually, I feel like I've had to advocate for myself more in the past 6-9 months more than ever before. 

I have visible blood in my urine with increased flank (kidney) pain after having my ureter compressed by a tumor, a nephrostomy and stent placed, then the nephrostomy tube removed sending my into a bacteremic psychosis only to have continued bleeding for a week and a half later.

Tues. after the tube was removed I had a pelvic ultrasound that showed no ulcers, abscesses, or cysts, but at that point I wasn't bleeding like I am now.

And no to the obvious question. I don't get my period. I haven't since 2006.

I've been calling, pushing for a blood test to determine if I need a transfusion.

Today I took the test and I don't, Maybe since I had my neupogen shot, but no effort has been made to find the cause. 

"Call if you start clotting" is the response. 

I won't start clotting. I'm on lovenox. If I clot I'll run to the ER crying and praying the next one doesn't go to my lungs or brain. 

At DF the first sign of bleeding I had an ultrasound and was given a depo shot after determining it was a cyst. 

I wonder what's the change. 

I'm concerned It's correlated to my choice to live with, and not cure, my cancer. 

Many people don't understand this choice. I didn't understand this choice until I made it myself, over three years after diagnosis.

 I hope it's not a consequence of all the cuts being made to health care, declining reimbursment rates coupled with rising costs leading to lack of quality care.

Either way, I'm stressed, and I know I do it to myself too. 

Here is what I'm hoping to accomplish in my "free time:" Finish 5 eagles site 2. Send Linda publishable posts. 3. Add to cancervivor: purchases are tax deductable with receipt up to $250; above $250 donations are tax deductable with a social security or FEIN #, available upon request. Add pics too, affordable earrings 4. Ask for old unwanted jewelry donations. 5. Make bio cards with stamps of authenticity 5. Edit and finish book. 6. Search for publisher 7. Organize and clean. Separate into trash/donate/sell/keep. 8. Re-apply to extreme makeover 9. Get relay for life page up with donations on site.

Any helpers or suggestions?

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