my back

[Guest guest]

I appreciate all the support on my back and wanted to share the latest. I

spoke to the orthopedist today. There is some evidence on my MRI that my

back is worse. Worse meaning the 'mass' or lesion is larger. So the

chemotherapy is not working to shrink it OR it is inflammation from the

fracture site after my adventures in Sweden. My adventures included:

1. tripping and falling at the Nobel hall during a dinner where they have

the banquet for the Nobel prizes. Very dignified, 2000 people, elegant,

black tie, I had on 3 " heels and a black gown (over my brace of course). And

I tripped and fell.

2. running (one is not suppose to with a fractured vertebrae) to not miss a

train with my husband and luggage on it.

3. Falling when trying to check the temperature of the ocean when climbing

rocks in Lysekil Sweden, [very dramatic, after I fell wave came up and

almost washed me out to sea as I couldn't get up with this stupid brace on).

Not to mention my husband behind me yelling Patty don't do that!... talk

about an 'I told you so' after we recovered from the shock of what had

happened

4. Over stepping a change in elevation between the rock wall of castle ruins

and the ground jarring my spine.

Ok, the problem being I am in major pain and my worst fear being the

fracture will dislocate and damage my spinal cord... I have no interest in

becoming a paraplegic. The 'mass' they won't call it a tumor because I have

two negative bone biopsies and no blood markers for lymphoma but they think

it is... suppose to be shrinking given that I am having chemotherapy for

that purpose, but it is not.

Here I am in the middle of this story and I don't know where to go. I just

spent an hour on the phone with my hepatologist who was laughing at my

adventures and musing why I would admit to them (but if I didn't, I knew my

husband would when he saw him...)He has a call into my transplant surgeon

vacationing in Greece. The topic is surgery or no surgery. Guy Neff (my

hepatologist) thinks we should go for a phenanal(sp) patch for pain and wait

to see if the retuxin shrinks the " mass " . The orthopedist wants to see me

Friday AM at 8 to make his recommendation which I already know is surgery to

rip out L4, put in a spacer, suck out the tumor and cure me.

So the big guy from Greece will hand down his verdict then .... to be

continued... Tune in on Friday...

Love you all.

Patty

Re: [ ] Mania, lupus, TONY HELLO!, kidney stones,

>etc.

>Date: Tue, 9 Jul 2002 11:45:20 EDT

>

>Amber, I don't have access to a dictionary where I am, much less a medical

>dictionary. However, I think you ought to ask the doctor exactly what he

>means by " mania. " His definition may be different from yours. In

>addition,

>consider that you will be in a medical setting, not running down Main

>Street.

> People undergoing medical treatment aren't expected to be in perfect

>control

>of their lives. Are you afraid, perhaps, that you won't come out on the

>other side, that the experience will change you permanently for the worse?

>

>, if your doctor decides a liver biopsy is appropriate, you'll soon

>have

>a much better indicator of whether AIH is your problem. As you know, lupus

>isn't always easy to diagnose with certainty. AIH diagnosis has the same

>problems, but a liver biopsy gives some fairly clear indicators.

>

>In Rome years ago, I was told to adhere to a very strict diet to prevent

>kidney stone recurrence. I did not. In San Francisco more recently, a

>very

>high-level kidney specialist told me that, except in some very special

>cases,

>changing one's diet doesn't really do any good in terms of preventing

>kidney

>stones. He said you would have to take drastic, unrealistic measures to

>limit kidney stones through diet; he said it's the sort of thing you can do

>with lab rats but not humans, a theoretical approach only.

>

>Hello Jeanette, hello Ruth.

>Harper

>

>

>Aisha, what is the " skin-only " form of lupus? I haven't heard of this.

>

>Tony, HELLO! I'm so very glad to hear from you! I miss you very much.

>

>Patty, keep writing, please.

>

>

>

>

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