You Miss 100% of the Shots You Don’t Take

From the Cushing’s Awareness Challenge:

attot's avatara tale of two tumors

The Gallium-68 scan I had last week was read as clean.  This is good news and bad news.  The good news is that I am not full of tumors.  The bad news is that the scan didn’t locate a single tumor in my thymus or anywhere else either.  I know I have said this before, but it is worth saying it again:  I am not Jonesing for a tumor.  Like any normal person, I would definitely prefer NOT having a tumor.  However, I am not a normal healthy person, right now.  I am sick.  And what I don’t want is to be sick with a tumor, with symptoms and evidence that are very suspicious for a tumor, and not be able to find it and get it removed.  Neuroendocrine tumors tend to be very tiny and can be very hard to find.  It is not uncommon for patients to be…

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Why is recovery from pituitary surgery so damn slow?

From the Cushing’s Awareness Challenge: “For a lot Cushing’s patients, the hardest thing to deal with after surgery is uncertainty regarding whether you are actually in remission or not. This might be very difficult for family and friends that never had Cushing’s to really understand. You had surgery, a tumor was removed – how can you not tell if you are better?”

attot's avatara tale of two tumors

For a lot Cushing’s patients, the hardest thing to deal with after surgery is uncertainty regarding whether you are actually in remission or not. This might be very difficult for family and friends that never had Cushing’s to really understand.  You had surgery, a tumor was removed – how can you not tell if you are better?

Well, it is just not that simple!   For starters, the pituitary gland is has just been sliced up like a loaf of Wonder Bread (literally – in addition to removing tumors that have been located in advance, most surgeons explore the gland during surgery to make sure no other tiny tumors are missed) and it needs time to recover.  If you had knee surgery and the surgeon sliced your knee up in multiple locations, you wouldn’t expect to just pop out of the recovery room and start skipping around.  Recovery from  pituitary…

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Day Twenty-four, Cushing’s Awareness Challenge 2015

Cushie Crusader, that’s me…and many others.  I think we all have an opportunity to be Cushie Crusaders every time we tell others about our illness, share our story on or offline, post about our struggles – and triumphs – on the message boards, write blog posts in this Cushing’s Awareness Challenge…

When we have prayer time in my handbell practice or choir rehearsals I try to mention issues that are going on in the community.  People are slowly but steadily learning about Cushing’s week by week.

A piano student mentioned that a person in a group she is in has Cushing’s, a non-Cushie friend mentioned last week that she had gone with a friend of hers to an endo appointment to discuss Cushing’s.

Get out there and talk about Cushing’s.  Let people know that it’s not just for dogs and horses (and sometimes ferrets)!

Here’s something I had made for Sue with SuperSue embroidered on the back.  Picture your name instead:

 

 

 

Day Twenty-three, Cushing’s Awareness Challenge 2015

 

This is a tough one.  Sometimes I’m in “why me” mode.  Why Cushing’s?  Why cancer?  Unfortunately, there’s not a thing I can do about either.  Cushing’s, who knows the risk factors?  For kidney cancer I found out the risk factors and nearly none apply to me. So why? But why not?  No particular reason why I should be exempt from anything.

Since there’s nothing to be done with the exception of trying to do things that could harm my remaining kidney, I have to try to make the best of things.  This is my life.  It could be better but it could be way worse.

One of the Challenge topics was to write about “My Dream Day” so here’s mine…

I’d wake up on my own – no snooze alarms – at about 8 am, sun streaming through the window.  I’d we well rested and not have had any nightmares the night before.  I remember my son is home for a visit but I let him sleep in for a while.

I’d get out for a bike ride or a brisk walk, come home, head for the hot tub then shower.  I’d practice the piano for a bit, then go out to lunch with friends, taking Michael with me.  While we’re out, the maid will come in and clean the house.

After lunch, maybe a little technology shopping/buying.  Then the group of us go to one of our homes for piano duets, trios, 2-piano music.

When we get home, it’s immaculately clean and I find that the Prize Patrol has visited and left a substantial check.

I had wisely left something for dinner in the Ninja so dinner is ready.  After dinner, I check online and find no urgent email, no work that needs to be done, no bills that need to be paid, no blog challenge posts to write…

I wake up from My Dream Day and realize that this is so far from real life, so I re-read The Best Day of My Life  and am happy that I’m not dealing with anything worse.

 

 

 

Collateral Damage

From the Cushing’s Awareness Challenge:

kelly's avatarZebraontheside

I have been hiding. I have thought about writing for the challenge but life has been taking over. I am working on a PhD and I am dealing with some issues that may make finishing impossible. Survival is my focus right now. Since coming to this university, I have had so many problems with others’ interpretations of my health and the backlash from that. I never wanted it to get out but things did. Their misconceptions have become my reality. I have been fighting back but I have a lot of uncertainty.

We are in a difficult predicament. Misdiagnoses, misconceptions, and out-flat lies can prevent us from living the life that we could live. I have been having a really hard time with how hard I pushed through when I had active Cushing’s Disease to have THIS happen to me now. I am having battles with the department yet again…

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