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 19, 2010

In With The Clinic

I just signed on for hospice.
It went better than I imagined.
I pictured tears and tight hand holding while trying not to look into each other's eyes.
Thankfully, this isn't what hapened. We are at one of the best, widely acclaimed center for care management led by celebrity Doctor Ira Byock.
He renowned for pioneering a new outlook towards death, slowly chipping away at fear and sterotypes while do it.
Here is an excerp from one of his publication, "The Four Things That Matter Most:"

Please forgive me," "I forgive you," "Thank you," and "I love you."

The Four Things are everyday guides for doing the right thing, for reconciling the rifts that divide people, and for cutting through old history—because you just never know.

Powerful real-life stories culled from Dr. Byock’s and other counselors’ patients who used the Four Things in all sorts of life situations show the possibility of interpersonal healing and wholeness, even in the wake of tragedy or the face of death. From a granddaughter’s last days with her ailing grandmother to a teenage girl’s first hour with her estranged father, these stories are “Every Day with Morrie”, enabling readers to imagine how they can use the Four Things in their own lives.

These eleven words can improve all relationships—at any time. Using the Four Things, Dr. Byock also reclaims the traditional meaning of “good-bye” as “God be with you”—a blessing that we all can use, whether parting from someone for an hour, a day, or at the end of a lifetime.

Now, Pick up your jaws.
Just like I thought this morning, hospice does not require a "dead by" date. I thought it was a year of living left.

No. It's not, nothing like that.

What we're working out is an individualized program where I can control mt pain at home. My last three visits have been for pain related issues alongside some other ailment.

They now think I have addison's. I'm getting the ACTH Stimulataion Test tomorrow.

It's ordered to assess the functioning of the adrenal glands stress response by measuring the adrenal response to adrenocorticotropic hormone (ACTH).[1][2] ACTH is a hormone produced in the pituitary gland that stimulates the adrenal glands to release cortisol.[2]

Thank you wikipedia.

THIS DOES NOT MEAN I CAN NOT RECEIVE TEATMENT.  I'll contine running to the doctor for huge issues like my lungs. I just hopefully won't be running  to the hospital for things like pain management.

I was alway curious about working in palliative care, mostly becaue their charge was the largest on my bill, but it's a unique subsect of nursing. Nothing quite parallels it.

It also calls to vie a unique set of symptoms the some nurses in other speciailties may not realize. Yes, there are symptoms of dying. Here they are if you want to look:
These guys don't give a timeline which would be helpful. I don't think I have less than weeks. I am experiencing many of the signs, but these can also be due to other pathologies. We'll see about that.

But I'm happy that now I'll be able to spend more comfortable time with my family while I try to save up the money to see a Dr. Ralph Moss in Boston. Dr. Moss is a lymphatic specialist that studies through out the world. Unfortunately, it's $800 to see him. He want me to buy his Lymphoma bok for $300 (essentially a testbook) before we can talk.

I do like his Moss Report's though. These you can sign up and receive for free about new innovative treatments that have suceeded in Europe. Many anti-cancer medications have been tried and proven safe in Europe: such as individualized vaccines vs. diseases and hyperthremia.
Hope everybody has a happy holiday. Smooches. 
I have taxes and Christmas coming up. You're all getting crafty presents.


Valerie said...

I'm trying to be cool about this, but the mention of the "H" word... I mean...
Before I say something stupid I want to say just that I know how awesome you are.
xoxoxoxoxo Love!

Anonymous said...

Phew...for a while there, I thought our Hillary had checked out! So relieved to read that the real Hillary is back and in control! Hope you and your family find peace and able to share as much joy as possible over the holidays.

Valerie said...
This comment has been removed by the author.