GOOD NEWS! - I love that!
Erella Ganon
Invariably I learn a lot from every visit.
There was a bit of trepidation, for sure, because I had an important MRI recently, a 3T one, which is more powerful than your run-of-the-mill MRI.
It is the difference between a camera with 5 or 10 megapixels. T is how they are measured. T is short for Tesla, the unit of measurement for MRI machines and the name of a scientist I admire. Because of the number of times a surgeon has cut in my brain and the radiation, and my super ability to grow tumour from the tiniest cells, they need a powerful MRI to examine the region.
I had also done some complicated blood and urine tests and needed to look at the results too.
I brought Jude along with me. I was so glad she was there. I had described the waiting room in the cancer hospital to her before and was so glad to have my drawings come to life for her. A kind volunteer asked me inane questions on a computer. "On a scale of 1-10 how is your mood today?" Yergh. I answered the questions and quickly returned to sit by my friend. She had my chart in front of her as she asked me questions about my surgeries. The lady came to me and passed on some "helpful" pamphlets about cancer. My tumours return in new places, so that normally indicate cancer, but I do not have cancer. She had my chart in front of her as she asked me questions about my surgeries.
The test results I was most interested in learning about were the cortisol levels.
He had tested the amount of that hormone in my blood and in my urine.
At their worst in 2010, they were 1640.
While "normal" is 280-340. That is five times what a functioning body produces or something. Cortisol is the stress hormone that when it is in overdose, like what my adrenal glands were producing, robs a body of calcium, permanently damaging teeth and bones, and killing me by putting strain on all my vital organs.
I nearly fell over when they said my cortisol level was 310!
This is the lowest my cortisol has been since 1997!
This means I can now recover.
Unfortunately, I have had 13 years of damage, so I still have to work on that but it means I reached a kind of apex and can start to heal with a healing body as opposed to one that was in decline.
I could crow!
It makes all the difference to be able working with my body instead of against it to reach my goal of good health. I love this feeling though I still feel crummy.
I have managed to wean to 35 mg of cortef now. (When I left hospital in Oct, I was on 100 daily). Though I am really motivated to wean to 20 or so, that is when my body will start to release the weight it is carrying, my doctors feel I am still not strong enough for that. I complained at being told to stay at 35mg. He reminded us that we don't have to be in a race. He wants to make sure I am strong enough to finish the race. He looked directly at Jude when he said that, as if to ask her to remind me to not get overenthusiastic. It was a jovial atmosphere in the room. Clearly they were pleased to have a patient that takes an active interest in their healthcare.
An interesting thing came out of the discussion. I told them my asthma is worse, in fact, I feel really horrid now because of a lot of pains that I am managing that are new and more intense than before my adrenal glands were removed.
It was explained that a normal person would use a steroid puffer for asthma control. The overdosing of cortisol (a steroid) that my body was doing was treating the asthma. Now that I am in the normal range, I will have to use a puffer, just like everyone else until my obesity hopefully gets under control, which is when my cortef is reduced.
I was asked how they knew that all of my adrenal glands are completely out of my body, will I have a ct of my abdomen or anything... are there any left over bits in there working against my will? He told me that my cortisol numbers wouldn't be as good if there were any bad bits there.
I am still having a lot of serious problems like vertigo, nausea, lethargy and diarrhea and my inability to stand or walk for more than a few feet without really losing it. He wants me to see a gastroenterologist, a specific one that he will talk to in order to get me a quick appointment. I have a huge whack of further tests to try to find out exactly what is ailing me. I feel we are on a new path now and though I really feel much worse than I did before my adrenalectomy, last autumn, it was very healing to hear one of the doctors remind me that I was dying then and now I am not.
I have been scanning some drawings from my sketch book.
Hope you enjoy them.
Erella
