I realized today it's been a month since Christmas, 6 wks since the terrible odysseys began with... Who the hell knows? I sugar coated the extent of my issues. There were so many to list beyond the insidiously growing cancer. On Christmas, I had been running to the bathroom each 30 min. For a stool. I had been an in-patient. I was fighting, and it had been a MONTh! I was too weak to live for myself. Everytime I prayed, I could only ask for help for loved ones who I couldn't help. I couldn't focus on me just the love I'd leave. I knew I was dying. I felt helpless, but I couldn't get what I needed: someone to look at me holistically, not as a bowel, GVHD, kidney. I knew my GVHD needed fixing first and along with it the extreme pain, with electrolyte imbalances leading to passing out, failure to thrive (I've lost 20 Lbs. Etcs). But Nobody was consulting to give me answers. No one was putting the pieces together. I was falling apart. All I wanted was to lie down and be told what to do to feel better, and I couldn't get a reliable phone call or opinion. I kept getting asked by attendings, specialists, my past geniuses what "I wanted to do?" For problems beyond me. I felt come hell, high water I needed to get to Dr.O. I'd die without treatment. I was passing out each time I moved bc each night I'd have diarrhea that would clean out my bowel and my nutrition. I couldn't get up from a sitting position due to thigh muscle wasting from steroids: couldn't climb stairs, step in or out of cars. People would follow me around to catch. My kidneys began to fail due to dehydration. The stent did fail and was replaced. My liver is failing. My heart is trying to follow. Long story short: we ran to NYC Tues through the icy-rain, scared, sliding. Me comatose. Dad with lifelong friend Denis B. For support drove for my first appt. With Dr. O at the new lymphatic center on 60th st. Dr. O's NP, Ellen, saw me first and nonchalantly asked about admission. I accepted. When I'm thrown a lifeline, I'm grabbing. While at the clinic the staff was organizing my bed and transfer via car/ambuelette service, no lights, or fanfare, I got bored. I stood up to grab my back pack, then everything went black. I passed out. Dad caught me and tried to lower me in a chair. I saw him through the fog. He was horrified, paralyzed. I realized he had never prepared or imagined this moment where I could die in his arms. That couldn't happen. I managed to scream help through gibberish, then dad yelled. When in doubt, call for help, especially in hospitals, clinics, the street near PD or FDNY. My doc called "911" as I lay flaccid and a real ambulance, which we begged, but didn't have to since the medics were great, to drive past good "911" hospitals to Colum-PRes where dr. O's team had a plan. So instead of the horse ride through the zoo at central park I've been dreaming of, which X would love, I got an ambulance ride, my first as a patient. I have been admitted to columbia-presbytarian hospital in NYC on 168th due to my illness. Mon. x thought I had an appt tues. and would be home. He now knows I'm sick in NYC but I don't know what else. He's prob going to have a bad week until we decide what to do with the fam, likely stay in school until Fri. At least. I have multiorgan failure, but will hopefully recover. Please inform anybody who can help and give my family extra TLC. Denis B, down for anything for as long I can remember, waited patiently, supporting Dad. He chased the ambulance over 100 blocks north from Manhattan to Harlem trying to decide where to sleep or stay safely. Denis took the car and drove home, leaving vic and I here. Dad slept in the rm with me first. We got to the rm at 3am after being in a NY ER, which he'd never experienced. He slept in the lounge staying vigil. But after one day of serious care where I saw specialist after specialist that made recommendations, that Dr. O had called in from CA, giving my immed. Family his cell phone number! I was treated by the doctor/pulitzer prize winning author of "Emperor of all Maladies: a history and treatment of Cancer.". Whatever they're doing, I think it's working. I could eat a little. I stand without passing out. I'm not crying in pain, but I'll have a game plan. That's the update. There's too much, and yet, to say except thanks for everybody's commitment to praying and boosting our family. Much love, Hillary
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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."