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, June 19, 2011

The "Best for Patient" Health Care Practice

The Chinese Doctor reached for my wrist then put his head down, closing his eyes and feeling the vibrations. He dropped my hands quickly, almost pushing them away, disgusted, like I had snot, germ covered hands, after he'd asked to feel my pulse.

 Dr. Wong always starts his appts. With an energy reading, and I, obviously, had failed mine..... Or so I thought. 

His head snapped up and I saw his face wide eyed in.... Horror. 

"You must stop your chemo now." He demanded. End of sentence. Silence. Wide eyed, horrified. Just staring. But nothing, No more words. I don't think a pause could get any more pregnant.

 " Really, you must stop you're chemo. You're too weak. You've taken too much. You are sicker than in NYC (mid-may, one month ago). The therapy has made you too sick. It's worse than the cancer." He Stopped abruptly, again and stared at me. 

I'd heard it, yes. His sense of urgency was clear, but I was shocked silent: how do you respond to someone who nearly jumped out of his seat screaming I should be dead I was so sick? 

I thought I was doing well. I'd been having some lung problems, wheezing and shortness of breath, and increased back pain from my fibrosis but I thought it was season and the weather. I'm so improved from last year. 
 Thank you to everybody who has helped me get here. has information about how to become a Licensed Practical Nurse. It is essential for patients to have advocates. I would not be doing as well as I am if I didn't have many. As a nurse, you could be the difference in people's lives."Really, you will die. You are lucky your... Your... Foundation is so strong. Your heart. Your heart has not failed."

 Hmmm, my heart is strong and its strength is the only thing keeping me alive... That could be taken so many ways... But I took the physical one. 

It was time I got over my shock and got down to business. I didn't die. I wasn't dead. Moving on. 

"I was an athlete. I took very good care of myself." I said. 

"Good Good. Can you get bone marrow? That is the best way to rebuild yourself now. You need bone marrow soup."

 "I can" I said. 

Thank you to the reader who told me I could buy it at Ralphs. 

 I know my pepere used to drink bone marrow. I had asked my previous transplant specialist in oct 2008 if I could buy a cow, but Things were different then. 

At least I could still ask my family about buying and butchering a cow. I have always felt fortunate to know where I can get food when its alive or growing. 

"The best thing for you now is beef tar tar with wasabi and lemon. It would go straight to the bone marrow".

 "It would clean out those sinuses" I joked.

"The wasabi and lemon are antibacterial. Thats why its always with sushi. To clean it." 

Oooooohhhhhh, so there's a reason, other than taste, for that. 

Our conversation went on in too much detail to completely parlay back to you, but in my years as a patient I've never met with a doctor with more passion for his job and for his patients.

 And this was only our second meeting, I only felt like a quesi-patient. 
In some place, after two visits, the Doctor still won't recognize you standing in line next to you in the outside world.
I've always hated this snobbery in our healthcare system, how can you trust somebody with your life if you can't trust them to return your phone calls in a timely fashion?

I want doctors that will treat me like they're trying to save their own life or their own child's.

Apparently, to Dr.Wong, in the complementary genre of medcine, or maybe just in Chinese Medicine, doctors are allowed to show how they feel, deal with patients in a straightforward manner with out fear of legal ramifications over hurt feelings.

 As I've found over the many hospitals and doctors cultures change drastically from hospital to hospital. 

One hospitals' attending doctors were available 24/7, another will get you a doctor, maybe a resident, 24/7.

 I wish I could take all the best case practices and put them in one place. I wish I could remove all the egos, biases, and competetion between hospitals, units, and co-workers, but crazy me again, wishing medicine was controlled by what's best for the patient.

After our meeting, Dr Wong called me out of the blue on Saturday to see if I'd found the tepur pot to cook my medicine in. He contacts the pharmacy to arrange my refills and assure they come every month.

Maybe, I've just found that "best for patient practice" I've been wishing for.


Valerie said...

Hilary, I am all for alternative medicine but when I hear things like 'stop chemo' I am so concerned for you... do your other docs know what is up? It's so demoralizing to have your docs not follow up with you in the way that they should. When someone takes a special interest in your case it is so heartwarming and such a relief, you can finally let go of the fight because you know you are being heard. Only you know what is best for you, but I am worried, and I care...

alian said...

Thanks for the post, This was exactly what I needed to see.Good list, keep up the good work