Scared ... Is Lung CANCER rare, worse in EDSers

March 24, 2004

Hi all,

It is hard as I sit here alone while once again Bill is in the hospital. This

time it is his right lung and I hear the cancer word mentioned. Previously,

it was lung cancer in his left lung. Previously his doctors said they could not

tell what the wispy fuzzy stuff in his right lung was. Tonight Bill tells me

it is the right lung that is now causing him his new abdominal pain ... right

over where the right lung problem is. I suppose he is scared, but mostly it

is me here worrying. He has been so drugged lately I do not know what he is

thinking but tonight he said the pain is terrible.

What scares me is this. Could the pain meds have numbed the cancer spreading?

I mean, we use the pain to know if something is wrong, but that pain was

" turned " off with all the pain meds ... or not.

Tomorrow I will take charge and " hobble " over to the hospitals records

department and find out for myself. This secret thing about patient privacy has

gotten ridiculous. I can understand why they do not want to tell people stuff

over

the phone. The hospital told me have << >> family come. Hey, we are

it, just the two of us. Bills Mom is too ill to travel. She has end stage renal

failure and if she came to visit Bill she has to fit it in her dialysis

schedule.

I also suppose Bill was in too much pain to give next of kin information in

the ER last night.

Here is my general question: General because I know every case of cancer is

different. What I am concerned about is this combination of EDS and cancer. How

does our collagen stand up against the big " C. " I suppose we are MORE prone

to cancer?

Anyway, right now his main symptom was his usual back, hip, joint pain. Since

he had terrible pain before the cancer diagnosis ... it is hard to keep

things separate. I read about EDS causing level 10 pain so how is cancer pain

added

to that.

Or, maybe I really do not need to panic yet. Sorry to ramble. But, I feel

group of doctors are keeping me in the dark. Or perhaps all of the above is

typical. I am miserable.

Caro

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