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, April 19, 2009

Reckless Googling

I googled a woman I received an email from a couple months back. Now I’m wishing I hadn’t.
She seemed well schooled. Her opinion and supporting facts were valid.
I wanted to see who this stranger was asking me questions
The woman is a MSW, LCSW from Portland, Oregon.
Her particular interests and realm of study focuses on death with dignity, assisted suicide, and the terminally ill.
My first reaction was, “What the hell is she doing contacting me?!”
Then I remembered, oh yes, many people think I will die.
The whole process of treatment, if they were added up like numbers into an equation, would equal that I am undergoing the dying process, and not the kind that we all start at birth, the kind with a very finite end and cause.
This thought is the elephant in the room. It is something that has probably crossed the mind of every person who has heard of me.
Is she going to die?
The answer: YES.
Sometime, eventually, I am going to die. I’m not too worried about that end all be all.
I am worried about the process.
I didn’t realize it could take so long.
I’m familiar with John Bowlbey’s “Stages of Grief.”
If you are not, he has four: (1) shock and numbness, (2) yearning and searching, (3) disorientation and disorganization, and (4) resolution and reorganization.
The four dimensions do not follow a set order and a person may experience feelings from several stages at one time.
Writings of Kubler-Ross, Engel, and Bowlby & Parkes address the grief process as reaching a resolution or end point. Those of us who have these ailments maybe lucky.
Some, including the parents of a child with a congenital anomaly or a person with an adult onset genetic condition (e.g., Huntington disease), do not always know when the end will occur. This causes prolonged grief, first described as "chronic sorrow," which has traditionally been used to describe the recurrence of the feelings associated with the grieving process by parents who have children with special needs.
This model was expanded and cyclical grieving was added to describe the cyclical nature of the recurrence of the emotions associated with the grieving process. This opposes the first idea of always feeling sad.
Chronic sorrow does not describe me, but I do move in and out of the "grief loop."
Cyclical grieving is said to occur frequently or may hardly occur at all, bt what’s agreed upon if that, generally, when these feelings of grief return, they are shorter in duration and less intense than the initial grief reactions. ttp://
Elisabeth Kubler-Ross, a swiss born psychiatrist who promoted hospice in the US in the 1950s states there are 5 stages of loss: Denial, Anger, Bargaining and Acceptance.
I learned about these theorists in high school psychology 101. I became familiar with them throughout nursing school. Let’s call them the “Death Doctors.” They are the alpha resources for death.
Well, at least they are to students.
As a patient, I agree with Kubler-Ross’s stages. I also do think grieving can be cyclical and jump through stages.
I do not agree with the idea that feelings of grief become less intense and shorter in duration.
Feelings are not like medications, you do not get a tolerance. The things, events, or people a person grieves for changes within the process making each incidence of sorrow unique.
Sometimes, I also grieve more with each loss.
Each therapy that does not work, each scan that is positive, every side effect of treatment serves the purpose of evidence that I will die.
More evidence does get me closer to a final resolve, but it all serves as reopening a very raw, deep wound that was really just healed on the surface.
On good days, I wonder what the step is after acceptance.
In the 1950s, the dying process occurred relatively quickly. A diagnosis of cancer meant one of two things: you would either be cured or you would die.
Medicine and disease have changed greatly in the past half century. I don’t believe any of the aforementioned theorists had any idea that the dying process could last for a decade from diagnosis to end.
I’m sure they couldn’t have anticipated a drug like “Gleevac” and the theory of cancer without disease.
There is no step in the grieving process for this living limbo.
I think there are now six steps to grief in the dying process.
I side with Kubler-Ross’s first 5 steps. Grief should be explained in simple, concise terms, not only to the actively dying, but to all to appreciate the fear and regression that may occur within a person.
The verbosity of Bowlby deducts from the rawness of emotions most people feel about their end. Death should be explained simply. It is simple.
The sixth step is transcendence.
At least it is for me.
Acceptance is knowing you are going to die and being okay with it.
Transcendence is not the same. Transcendence goes beyond accepting.
This idea of transcendence is accepted in different terms but similar ideology in most religions.
Buddhists transcend to Nirvana. Mary ascended to heaven.
Transcendence during the dying process of those of us that are not the Virgin Mary or Buddha is inner peace.
I’m glad I found it.

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