Recent doctor's report

[Erella Ganon]

Hello everyone,

I went to see dr Ezzat Monday. 

He and my GP (who I call Dr Trudy) are the two main doctors coordinating all the specialists at this point. 

His specialty is Endocrine Cancers. His wife specializes in Children's cancers. I sometimes feel a kind of survivors guilt when I see him at Princess Margaret Hospital, where it is mainly cancers that are treated there. I don't have cancer, thank goodness. The other patients look way less healthy than I feel, no matter what I am complaining about.

He looked at my charts with me.

My file is thicker than many encyclopedias. 

(Please pretend you know what one is and how thick they can be.)

I was very proud. I had been weaning my cortisol pills, enduring severe pain and discomfort so that I can reach a healthy spot. I want to be there so badly.

When I left hospital last fall to have my adrenal glands removed, I was taking 100mg a day when I got out

I have learned that there is a kind of sweet spot at about 15-20mg a day when the patient's body returns to normal. I so look forward to that day.

I was very excited to announce that though it had been horridly difficult, I managed to get to 25mg.

My friend Sue pointed out that it is good that he isn't obsessed about numbers. He is listening to me and trying to come up with a solution.

The doctor and I went through the recent test results. There were lots of them.

He doesn't think I have M.E.N. type 2a, -thank goodness.

He doesn't think there is a problem with my pancreas either.

We've checked my thyroid, and ACTH levels. I don't have C DIff either.

He said that the blood tests show that the only abnormality was that my eosinphils were high.

They're white blood cells. 

Normally it means an infection. It is something to do with my ability to fight ailments. I am catching ever cold or flu lately.

In my case it is because of a lack of cortisol.

It seems that all of my vitals are not behaving as they should.

I am having a weird retching cough that shows itself at night. 

A kind of burp happens and my throat fills with a white slimy saliva. This attack thing happens for about 5 minutes. I drink some water, endure some, drink some more water and it goes away. 

Scary when it happens in the middle of the night.

Then came the bad news. He prepared me because he knew I wouldn't like it. 

He wants me to take a break from the weaning. He wants me to go all the way back to 60mg a day (from the 25 mg that I managed to reach last week) for two weeks to see if the acute symptoms are still there. I will then wean slower from that point.

He said the severe diarrhea lasting months and months has something to do with this.

My dear friend Ami sent me this invaluable document for my new situation and how to cope.

http://www.addisons.org.uk/info/manual/page1.html

http://www.addisons.org.uk/info/manual/crisismanagement.pdf

In there they say that diarrhea for more than a day is a cause for concern.

Dr wonderful thinks that I should be feeling good next week.

Once I am stable, I will go through the uncomfortable wean again from 60mg to 20 mg or something. It was no fun last time, I am not looking forward to doing it again. I know that I will eventually feel strong and this will pass.

I had an email conversation with a friend. She was asking how I was actually feeling.

I told her that I look forward to feeling strong again.

This was Paula's comment. I cannot tell you how much I keep receiving from this.  I have thought about it many times since she sent it to me. I hope she doesn't mind me sharing it with you.

you are not the sick one.  you are in the process of transitioning through the illness.  when i visited optimum health institute many years ago they spoke about people cancering vs. having cancer.  one was a process to go through while the other was a life sentence.

 

your journey has been very long and varied, but you have weathered it well and bravely.  you have inspired many people around you with your creativity, positive outlook, strong sense of optimism, and showing everyone the small things that make a big difference in having the energy and will to fight the good fight.

 

you are recovering, and lord knows you are strong!

Have a look at the bump on my wrist here.

I am hoping it will just go away on its own without any help, bible thumping or surgical help.

Facebook is changing all their groups so my NO Brainer group with have to migrate to something else. I'm not sure what that will be.

I haven't heard any more from the publishers that I have sent my work to. If anyone has any ideas, please let me know.

I want to send a bit of love to Kiera. She's gone to Viet Nam recently where she's volunteering at an AIDS orphanage for a few months. From the sounds of things, she's having a wonderful life-changing, learning experience. I love hearing about her adventures and the people she's working with. More than anything, I am enjoying her observations about the smiling people she encounters every place she goes. Go figure Kiera. I think it is because her beaming smile enters every space before she does.

I have a nice story for you.

I went to OCADU where I studied Photo Electric Arts in the early 80's. It is where i learned about computers, electronic music, holography and conceptual art.

One of my favourite professors, Michael Page and his family have kind of become mine.

I wrote you last time about the bike that I put a down payment on. He contacted my friend Shelagh and quietly paid off what I owed without a word or anything. Shelagh bought the bike for $700 or something dollars. She was offering it to me for an amazing price anyway. Now it is completely paid for.

I am so glad to have this amazing bicycle. Michael is so thoughtful. 

I am still not that confident on it but it is becoming easier.

Last time I had brain surgery, Celeste was well cared-for by Michael, Claudette and their family.

I am so luck for every one of you that has a part of my world.

Thank you for being there.

love, 

Erella

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