From my bio at http://www.cushings-help.com/maryos_story.htm
(originally posted 3 years ago) ...My endo appointment is over. Turns out that the argenine test that was done 2 years ago was done incorrectly. The directions were written unclearly and the test run incorrectly, not just for me but for everyone who had this test done there for a couple years. My endo discovered this when he was writing up a research paper and went to the lab to check on something.
So, I'm off GH again for 2 weeks, then I'm supposed to be retested. The "good news" is that the argenine test is only 90 minutes now instead of 3 hours.
Update June 2, 2006
Wow, what a nightmare my argenine retest started! I went back for that Thursday, April 27, 2006. Although the test was shorter, I got back to my hotel and just slept and slept. I was so glad that I hadn't decided to go home after the test.
Friday I felt fine and drove back home, no problem. I picked up my husband for a biopsy and took him to an outpatient surgical center. While I was there waiting for the biopsy to be completed, I started noticing blood in my urine and major abdominal cramps. I left messages for several of my doctors on what I should do. I finally decided to see my PCP after I got my husband home.
When Tom was done with his testing, his doctor took one look at me and asked if I wanted an ambulance. I said no, that I thought I could make it to the emergency room ok - Tom couldn't drive because of the anaesthetic they had given him. I barely made it to the ER and left the car with Tom to park. Tom's doctor followed us to the ER and became my new doctor.
They took me in pretty fast since I was in so much pain, and had the blood in my urine. They thought it was a kidney stone. After a CT scan, my new doctor said that, yes, I had a kidney stone but it wasn't the worst of my problems, that I had kidney cancer. Wow, what a surprise that was! I was admitted to that hospital, had more CT scans, MRIs, bone scans, they looked everywhere.
My open radical nephrectomy was May 9, 2006 in another hospital from the one where the initial diagnosis was made. My surgeon felt that he needed a specialist from that hospital because he believed preop that my tumor had invaded into the vena cava because of its appearance on the various scans. Luckily, that was not the case.
My entire left kidney and the encapsulated cancer (10 pounds worth!) were removed, along with my left adrenal gland and some lymph nodes. Although the cancer (renal cell carcinoma AKA RCC) was very close to hemorrhaging, the surgeon believes he got it all. He said I was so lucky. If the surgery had been delayed any longer, the outcome would have been much different. I will be repeating the CT scans every 3 months, just to be sure that there is no cancer hiding anywhere. As it turns out, I can never say I'm cured, just NED (no evidence of disease). This thing can recur at any time, anywhere in my body.
I credit the argenine re-test with somehow aggravating my kidneys and revealing this cancer. Before the test, I had no clue that there was any problem. The argenine test showed that my IGF is still low but due to the kidney cancer I cannot take my growth hormone for another 5 years - so the test was useless anyway, except to hasten this newest diagnosis...
So, here we are 3 years later...
I find it amazing in a way. The time seems to feel like more than 3 years. Yet, had I been told I had 3 years to live back then, I would have seemed like a short time. Amazing, the tricks that time can play.
I wish I could say that I feel wonderful now but I can't. My energy levels are still so low and my temporary part-time job isn't helping.
Because the one adrenal gland I have isn't working and the other is gone, I'm still taking cortisol, although much less than my endo wants me to take. If I take more, I start gaining weight again.
I'm feeling almost Cushie - when I'm home I'm sleeping but sometimes I's awake during the night, too.
I'm also eating more than normal, I think. Not meals, but snacks, junky stuff.
Trisha Torrey wrote in her blog about Patient Empowerment a post titled An Ethical Conundrum - Should I Share This Information? One of her questions was "How many patients, when given the choice between quality of life vs quantity of life, would choose quality anyway?"
Part of my response was "I want as much information as possible about my diseases and I want to be able to decide what do with that information...
I would much rather have a better quality of life than a longer one."
And it's true for me, today. What is the point of hanging around for 20 or so more years if they're just spent sleeping?
True, I'm not in pain or anything but shouldn't there be more? Am I just here to help other Cushing's patients? I think I have enough started that future folks can help themselves.
I often see studies and clinical trials for Cushies and various drug options. And the cut-off date is always younger than I am. Does this mean that possible future treatments wouldn't work for me? Am I now too old to deserve a better quality of life? What's the deal with that?
I know there are no answers to all this. Maybe in my lifetime someone will come up with some answers to all this and I'll be out doing stuff. I sure hope so!
But now it's time for a nap...