A Simple and Cost-Effective Approach to Assessment of Pituitary ACTH and GH Reserve – Combined Use of the Overnight Metyrapone Test and IGF-I Standard

http://jcem.endojournals.org/cgi/content/abstract/jc.2008-0154v1

A Simple and Cost-Effective Approach to Assessment of Pituitary ACTH and GH Reserve – Combined Use of the Overnight Metyrapone Test and IGF-I Standard Deviation Scores

Submitted on January 22, 2008
Accepted on July 22, 2008

A Simple and Cost-Effective Approach to Assessment of Pituitary ACTH and GH Reserve – Combined Use of the Overnight Metyrapone Test and IGF-I Standard Deviation Scores

James Gibney*, Marie-Louise Healy, Thomas P. Smith, and T. Joseph McKenna

Department of Endocrinology and Department of Medicine, St. Vincent's University Hospital Elm Park and The Conway Institute of Biomolecular and Biomedical Research, University College Dublin, Ireland

* To whom correspondence should be addressed. E-mail: james.gibney@amnch.ie.

Context: The insulin tolerance test (ITT) is the gold standard for assessment of ACTH and growth hormone (GH) reserve in patients with suspected hypopituitarism. It is labour-intensive and costly.

Objective: To determine whether use of the overnight metyrapone test (OMT) and plasma IGF-I standard deviation scores (IGF-I-SDS) could provide a cost-effective alternative to the ITT.

Design: A retrospective chart review

Setting: A teaching hospital

Participants and intervention: Charts from 100 patients with organic pituitary disorders were reviewed. All underwent the OMT unless 9am plasma cortisol was <80>450 nmol/l when ACTH-deficiency or ACTH-sufficiency respectively was diagnosed. Patients were considered GH-deficient if the age-related IGF-I-SDS was <-3 or if they had 3 or more other pituitary hormone deficiencies (PHDs). Patients were considered GH-sufficient if age-related IGF-I-SDS was greater than the 95th centile established from patients with known GHD. Thirty-three underwent an ITT.

Main Outcome Measures: The proportion of patients in whom ACTH and GH reserve could be assessed using OMT/IGF-I-SDS. The concordance with results obtained from ITT.

Results: Fifty-five patients were ACTH-sufficient and 45 were ACTH-deficient. Twenty-one were GH-sufficient and 33 were GH- deficient based on IGF-I-SDS and other PHDs, while 46 could not be classified. There was near-uniform concordance between OMT/IGF-I-SDS and ITT. Initial investigation using OMT/IGF-I-SDS resulted in a significant cost saving. Conclusions: ACTH and GH reserve can be accurately and cost-effectively investigated using OMT/IGF-I-SDS in approximately 50% of patients with organic pituitary disorders.

Key words: Hypopituitarism • Overnight Metyrapone Test • IGF-I

Vision(ary?)

Yesterday, I went to a friend's to play piano duets. I put in my contact lens. I only wear one most days. When I ring handbells, I wear a special "bell lens" in my left eye so I can read music across the bell table.

Anyway, when I left for my friend's house, my vision was a little blurry but I figured it would clear up during the drive. I even went in the house to take out just to be sure it was in.

Luckily, I know the way really well so I didn't need to read any signs or anything. I mentioned my blurry eye to my friend and said it was lucky I had an appointment with my ophthalmologist Thursday. She said she had one the same day but her's is 8:30 and mine is 9:30 so I guess she'll be doing the eyedrop thing when I first get there. Very strange that we should set up such similar times.

An aside about my ophthalmologist...I've been going to him for nearly 28 years. My husband first found him when I was playing the organ at this little church. I had been there practicing on a Saturday and the minister's cat came in and walked across the top of the organ. I am very allergic. When Sunday rolled around my eyes were glued shut. I had to call around for a substitute organist and my husband called around for an eye doctor. On Sunday morning, there weren't any and our local hospital hadn't been built yet so there was no close-by ER to go to. This doctor, who had never seen me before, agreed to open up his office and see me immediately.

I have been indebted to him ever since and I've told all my friends about this kind doctor. When I was first scheduled for NIH testing pre-op, I told them that I couldn't come for that start date because I had an appointment with this doctor and I didn't want to break it.

[aside over]

Anyway, I got home and checked the case - I had the correct eye cover off and the right eye lens in.

So, I took the lens out, cleaned it very carefully and soaked it over night. Today, the eye was blurry again. On a hunch, I tried the lens in the left side of the case and it worked.

Guess I must have been so tired when I took out my left lens on Sunday after ringing bells that I put it in the right side of the case without thinking.

Today I have a massive headache, probably from squinting all yesterday.

At least I'm not going blind, just yet!

Electronics and Health

A while back I posted about my WiiFit in a post called Just Mii and My Shadow... Sine the Music Camp experiences, I've gotten out of the WiiFit habit but I've also started a Nintendo DS program called My Weight Loss Coach.

I just started doing this today and it was kind of interesting - better than the games I usually play, anyway! Maybe by the end of the year or so I'll actually lose some weight and / or get some more energy. Either or both would be great.

I'm sure that this program gets harder as time goes on. They didn't want to put people off the first day.

Now, I have to restart the WiiFit after too long a hiatus.

It's amazing how easily the excuses come. I couldn't do this because of music camp, because of the dentist, because of an eye doctor appointment, because I was napping...

So - wish me luck as I try to get healthier.

Should I have been a fortune teller?

My golden oldie post last night about feeling invisible was quite prophetic. 

I was very proud of something that had happened that I had a part in and I posted about it elsewhere.  I saw lots and lots of people read that post and only one person commented on it.  I guess I expected others to realize that this was a good thing and say a few words rather than just moving onto something else. 

In a way, this reminds me of my parents's behavior when I had their one and only grandchild.  We were still in the hospital and my husband brought them to see the new baby.  One or the other of them said "When you've seen one baby, you've seen them all".  Wow, what a gut wrencher that was for me.

I guess when you've seen one online accomplishment, you've seen all those, too.

I've since removed the post because I was tired of seeing the reader count go up and up.  This is a lesson I should have learned long ago but I didn't and it still hurts every single time.  You can't count on others for psychic income!

New Search Engine - We're on the first page!, Former Googleers unveil Cuil, a new search engine

Scroll to the end!

Former Googleers unveil Cuil, a new search engine

By Eric Auchard Mon Jul 28, 1:18 AM ET

A start-up led by former star Google engineers on Sunday unveiled a new Web search service that aims to outdo the Internet search leader in size, but faces an uphill battle changing Web surfing habits.

Cuil Inc (pronounced "cool") is offering a new search service at http://www.cuil.com that the company claims can index, faster and more cheaply, a far larger portion of the Web than Google, which boasts the largest online index.

The would-be Google rival says its service goes beyond prevailing search techniques that focus on Web links and audience traffic patterns and instead analyzes the context of each page and the concepts behind each user search request.

"Our significant breakthroughs in search technology have enabled us to index much more of the Internet, placing nearly the entire Web at the fingertips of every user," Tom Costello, Cuil co-founder and chief executive, said in a statement.

Danny Sullivan, a Web search analyst and editor-in-chief of Search Engine Land, said Cuil can try to exploit complaints consumers may have with Google -- namely, that it tries to do too much, that its results favor already popular sites, and that it leans heavily on certain authoritative sites such as Wikipedia.

"The time may be right for a challenger," Sullivan says, but adds quickly: "Competing with Google is still a very daunting task, as Microsoft will tell you."

Microsoft Corp, the No. 3 U.S. player in Web search has been seeking in vain, so far, to join forces with No. 2 Yahoo Inc to battle Google.

Cuil was founded by a group of search pioneers, including Costello, who built a prototype of Web Fountain, IBM's Web search analytics tool, and his wife, Anna Patterson, the architect of Google Inc's massive TeraGoogle index of Web pages. Patterson also designed the search system for global corporate document storage company Recall, a unit of Australia's Brambles Ltd

The two are joined by two former Google colleagues, Russell Power and Louis Monier. Previously, Monier led the redesign of ecommerce leader eBay Inc's search engine and was the founding chief technology officer of two 1990s Web milestones, AltaVista and BabelFish, the first language translation site.

"They do have the talent that is used to building large, industrial-strength search engines," Sullivan says of Cuil.

Cuil clusters the results of each Web search performed on the service into groups of related Web pages. It sorts these by categories and offers various organizing features to help identify topics and allow the user to quickly refine searches.

User privacy is another appeal of its approach, Cuil says. Because the service focuses on the content of the pages rather than click history, the company has no need to store users' personal information or their search histories, it says.

"We are all about pattern analysis," Patterson says. "We go over the corpus (Web pages) 12 times before we even index it."

DOES SIZE MATTER, ONCE AGAIN?

Cuil has indexed a whopping 120 billion Web pages, three times more than what they say Google now indexes, Patterson said, adding the company has spent just $5 million,
Google itself preemptively responded to Cuil's arrival with a blog post on Friday boasting of the growing scale of its own Web search operations.

Sullivan said he puts no stock in either company's boasts about the size of their indexes, since it has only an indirect effect on the ultimate success Web surfers have in searching. And Cuil's privacy virtues are exaggerated, he adds.

Founded in late 2006, the Menlo Park, California-based Cuil has raised $33 million in two separate rounds: The first, for $8 million from Greylock and Tugboat Ventures, and the second for $25 million by Madrone Capital Partners.

Initially, Cuil is optimized for American English. Later this year, the company plans to enable Cuil users to perform searches in major European languages, Patterson said. Eventually, Cuil plans to make money by running ads alongside search results, she said, but provided no further details.

Cuil is one of a number of start-ups that are looking to introduce new technology that can change the competitive dynamics of the Web search market that Google dominates.

Earlier in July, Microsoft bought Powerset, a San Francisco-based search start-up that enables consumers to use semantic techniques -- conversational phrasing instead of keywords -- to search the Web.

(Editing by Lincoln Feast)
~~~~~~~~~~~~~~~
I did a search for Cushing's and this came up on the first page. In among the medical institutions was US. It's a kind of hybrid, though - the logo is from here, in April, and the URL is for the main site but who cares???

Click to view full image

Feeling Invisible (Golden Oldie)

From Jan 20 2007

Boy, I've wanted to post in here since this topic came up and I was planning to write something "great" and edit it and it would be perfect but, of course, I never got to that so I'm just typing as my brain crawls along.

Thanks for bringing this up, N. I do think I know what you mean. I miss a lot of the people from the past, too. I know it's very hard to stay with a site for a long time. You get better, you move along. Or you have disagreements with people, or you just get tired of saying and reading the same things over and over.

Although I have a ton of posts, I rarely post anything "real" anymore. All my stuff is news items, about new bios, updated locations, all business stuff.

Why? Well, I figure I've said everything I know already, many times. When I had my Cushing's - before there was any kind of support at all (even at home) there were no options like going to doctors on other coasts, no picking and choosing where you could go for diagnosis and treatment. I did have a surgical choice: NIH, Montreal and somewhere in San Francisco. I chose NIH because it was close, fee, and I didn't speak French.

If my endo didn't work out, there was no possible thought of traveling anywhere. I just waited until I got sick enough and someone believed me.

Nowadays, there are other options and that's a good thing. But it often brings dissent and hard feelings on the boards. People tend to believe absolutely that their doctor/surgeon is the best and want everyone to believe that, too. Or they hate their doctor/surgeon and want everyone else to believe that, too. From these poles we've had many arguments over the years. Interestingly, people who have never seem these doctors will take sides and align with a pro-East OverShoe group or an anti-West UnderShoe group and the board is split into 2 parts with a lot of unhappy people no matter which way it goes. And a lot of those people - in either group - leave. People who feel their doctor/surgeon attacked leave and people who liked the doctor/surgeon leave because they feel misunderstood.

I don't know what the solution is for that.

People leaving because they are cured is a good thing, I guess, but I'd love it if there were a sense of community service or something - if you get cured, you have to stick around and help others for X amount of time. Some people disturb me. They get what they need, have surgery, and we never see them again - or until there's a recurrence. Then, the same pattern.

And of course several people have left us because they died. And that's the worst of all. Every time someone from here dies, it just tears me up. And then there was Sue...

That's what distinguishes this board from other sites. People helping people. Everyone. I know people fall through the cracks sometimes and I hate that.

I'd love for everyone to get what they need here but the boards are just too big now for everyone to support everyone else. In the olden days, I used to respond to everyone but that's no longer possible. I can't even keep up with the new posts. I'll see a name on the boards and think it's a new person but when I look they've posted a hundred times.

A while ago, I posted something to help more people support others - it's at a link at the top of every page and it says "Help Others". It goes to this page: http://www.cushings-help.com/interactive.htm#contribute Check it out and help your fellow sufferers even more.

When these boards started I was member #1. Several board changes have changed my number but I was still there at the beginning. I knew P from AOL message boards even before I started this website and then these boards a few months later. She's right - there was N next and a husband desperately trying to get answers for his wife. Little by little the boards grew and grew. We were all very friendly because there weren't that many of us fighting the world and doctors. We only had each other.

Then, there was a legal problem with SupportPath message boards and many of those members came here. And they all "knew" each other and had a history. Of those people, I think only two are left.

Everyone else has come in on their own from places around the web, looking for help, information and support with this terrible disease that outsiders don't understand.

(I think I'm rambling now!)

I think it's very important to support everyone, whether or not you believe in their choice of doctor, treatment, whatever. YOUR way is not always right for someone else. Even if it is, they may not want to hear it.

All that being said...I've felt unsupported here, too. When my last birthday came up, it was listed along the bottom of the page and not one person said Happy Birthday to me. No one. I mentioned in Weekend Check-in that my husband had also not remembered my birthday and that spurred one person to then say Happy Birthday. I found all that to be incredibly depressing and I removed my birthday from the list. I'd rather no one know than have the info available and people not interested.

But what's worse, I think, is if there's a day with several birthdays and people will start topics to everyone of them but one. I've seen that on other boards - not sure if it happens here or not. That's like inviting everyone in your class to your party EXCEPT the overweight ugly kid with the glasses.

Since I was always the overweight ugly kid with the glasses, I know how it feels to be rejected, unloved, unsupported and I just hate for others to feel that way.

Years ago, I posted this on Power Surge (maybe here, too):

There used to be a TV show long ago which involved a cloak that would make the wearer invisible.

Sometimes, I think that I have one of these things on much of the time. People don't see me, they don't see my posts, it's like I'm just invisible.

.................

CS, I join the others who can relate to how you're feeling. People almost never respond to my posts, either. The conversation doesn't usually stop, but people who comment mention everyone's posts but mine, sometimes even thanking someone else for what I've said or the info that I've posted.

So I've stopped posting things about me pretty much. Most all of my posts now are links to other information here on Power Surge and stuff like that. I just can't bear my soul anymore and have it ignored. I've found that most people are interested in what can be done for them, not how to help someone else. I even posted about this way back in 2001, in a topic I started called Invisibility.

People rarely send me PMs. When they do, it's because they want something. I don't recall anyone ever asking how I was. I don't chat in the InstaChat anymore, either because I feel invisible, in the way, like I don't fit in. Almost like Junior High, when you're not with the "in crowd".

So, I can certainly understand how everyone has responded to you CS, as well as how you're feeling. I wish I knew the answers, though - and I hope you feel better soon!

And I still feel that way to a great extent. I don't post here (or there) about how I'm feeling. But it sure is weird to spend so many hours a day working on a site/boards and not feel a part anymore.

I feel like my combo of "stuff" is something that I don't share with anyone else. no one here probably wants to hear about my cancer fears or my fatigue issues (again!) I tried posting some of my cancer stuff as a blog but didn't get very far. Eventually, there was no response, so I locked it so I wouldn't feel hurt about that, too. I'm GH deficient but can't take growth hormone so I don't even fit into that category, either.

Boy, is this turning into a Pity Party! Sorry...time to stop this response.

Anyway, N, I'm sorry you're feeling this way and sorry I went off on a tangent with my own stuff.

Medical Records

I'm a long-time member of Medic Alert (http://www.medicalert.com). When I left NIH following my pituitary surgery for Cushing's, they told me I should get a bracelet and I took them to heart.

Over the years, some medical personnel have looked at my bracelet, but the thing I like best about it is that I always have an organized page that I can print and take to doctor appointments and to the hospital.

The page I print out includes my doctors' information, husband's and other family info, surgeries, drugs, tests, allergies and other important info.

Whenever any of this changes, I print out another batch and take them to my doctor or dental appointments. I also carry a copy when I travel, just in case.

In case of emergency, medical personnel can call Medic Alert for free and get all this information, too.

If you don't already have a system for keeping track of your medical records - and you should - you can try this:

From Google.com

Google Health puts you in charge of your health information. It's safe, secure, and free.

• Organize your health information all in one place
• Gather your medical records from doctors, hospitals, and pharmacies
• Keep your doctors up-to-date about your health
• Be more informed about important health issues

Google stores your information securely and privately. We will never sell your data. You are in control. You choose what you want to share and what you want to keep private. View our privacy policy to learn more.

Take a quick tour

Google Health Tour

1. Sign up for Google Health

With Google Health, you can store and manage all your health information in one place. And it's completely free. All you need to get started is a Google username and password.

So is it safe? Yes! We believe that your health information belongs to you, and you should decide how much you share and whom you share it with. We will never sell your data. We store your information securely and privately. Check out our privacy policy to learn more.

2. Start tracking a medical history and learn about your conditions

You can create and save a Google Health profile using your free Google Account. You can enter as little or as much information as you want—for example, conditions, medications, and allergies. Click the Reference links to read about symptoms, causes, and treatments. You can even create additional profiles for your kids, your parents, or anyone you care about.

3. Import your medical records

Of course you don't want to type in your entire medical history yourself. So we've partnered with hospitals, labs, and pharmacies to allow you to import your records and prescription history from healthcare providers that treat you. Linking accounts with these partners is secure. Just identify yourself by signing in at the partner's site with the username and login that you have with them, and then confirm that you want to link accounts and transfer data to Google Health.

4. View your medical history

Google Health can help you track your medical history. Use your profile to view a summary of your medical history, or drill down to see the details close up. Having all your health information organized and centrally located will help keep your doctors up-to-date when you visit them.

5. Find out how medications might interact

Every time you add new health data to your profile, Google Health will check for potential interactions between your drugs, allergies, and conditions. Review these helpful tips to see if there are any issues you should talk to your doctor about.

6. Make your health information work for you

Refill prescriptions online, ask for a second opinion, or get personalized health information based on your profile. You can link to these services in the same way you link to other partners to import your medical records. Google has no financial relationship with any of these companies. You decide whether to connect with a service and share your health information with it.

7. Search for doctors and hospitals

Search for existing or new doctors by specialty or location. You can review professional details about doctors or easily view their business locations in Google Maps. You can search for hospitals too. Add all your providers to your medical contacts list so this important information is always close at hand.

It's that simple! You can access your information anywhere, anytime by signing in to your Google Health Account.

Try it now!

Wonderful Words of Life...

I'm acquiring the title of an old hymn for this next post.

After I was finished with the long diagnostic process, surgery and several post-op visits to NIH, I was asked to give the scripture reading at my church. The man who did the sermon that week was the survivor of a horrific accident where he and his family were hit by a van while waiting at an airport.

i thought I had written down the verse carefully. I practiced and practiced, I don't like speaking in front of a crowd but I said I would. When I got to church, the verse was different. Maybe I wrote it down wrong, maybe someone changed it. Whatever.

This verse has come to have so much meaning in my life. When I saw at a book called A Musician's Book of Psalms each day had a different psalm. On my birthday, there was "my" psalm so I had to buy this book!

Psalm 116 (New International Version)

1 I love the LORD, for he heard my voice;
he heard my cry for mercy.

2 Because he turned his ear to me,
I will call on him as long as I live.

3 The cords of death entangled me,
the anguish of the grave came upon me;
I was overcome by trouble and sorrow.

4 Then I called on the name of the LORD:
"O LORD, save me!"

5 The LORD is gracious and righteous;
our God is full of compassion.

6 The LORD protects the simplehearted;
when I was in great need, he saved me.

7 Be at rest once more, O my soul,
for the LORD has been good to you.

8 For you, O LORD, have delivered my soul from death,
my eyes from tears,
my feet from stumbling,

9 that I may walk before the LORD
in the land of the living.

10 I believed; therefore I said,
"I am greatly afflicted."

11 And in my dismay I said,
"All men are liars."

12 How can I repay the LORD
for all his goodness to me?

13 I will lift up the cup of salvation
and call on the name of the LORD.

14 I will fulfill my vows to the LORD
in the presence of all his people.

15 Precious in the sight of the LORD
is the death of his saints.

16 O LORD, truly I am your servant;
I am your servant, the son of your maidservant;
you have freed me from my chains.

17 I will sacrifice a thank offering to you
and call on the name of the LORD.

18 I will fulfill my vows to the LORD
in the presence of all his people,

19 in the courts of the house of the LORD—
in your midst, O Jerusalem.
Praise the LORD.

I carry a print out of this everywhere I go because I find it very soothing. "when I was in great need, he saved me." This print out is in a plastic page saver. On the other side there is an article I found after my kidney cancer. I first read this in Chicken Soup for the Surviving Soul and is posted several places online.

The Best Day Of My Life
by Gregory M Lousignont

Today, when I awoke, I suddenly realized that this is the best day of my life, ever! There were times when I wondered if I would make it to today; but I did! And because I did I'm going to celebrate!

Today, I'm going to celebrate what an unbelievable life I have had so far: the accomplishments, the many blessings, and, yes, even the hardships because they have served to make me stronger.

I will go through this day with my head held high, and a happy heart. I will marvel at God's seemingly simple gifts: the morning dew, the sun, the clouds, the trees, the flowers, the birds. Today, none of these miraculous creations will escape my notice.

Today, I will share my excitement for life with other people. I'll make someone smile. I'll go out of my way to perform an unexpected act of kindness for someone I don't even know.

Today, I'll give a sincere compliment to someone who seems down. I'll tell a child how special he is, and I'll tell someone I love just how deeply I care for her and how much she means to me.

Today is the day I quit worrying about what I don't have and start being grateful for all the wonderful things God has already given me.

I'll remember that to worry is just a waste of time because my faith in God and his Divine Plan ensures everything will be just fine.

And tonight, before I go to bed, I'll go outside and raise my eyes to the heavens. I will stand in awe at the beauty of the stars and the moon, and I will praise God for these magnificent treasures.

As the day ends and I lay my head down on my pillow, I will thank the Almighty for the best day of my life. And I will sleep the sleep of a contented child, excited with expectation because know tomorrow is going to be the best day of my life, ever!

When I'm feeling down, depressed or low, reading my 2 special pages can help me more than anything else.

Recurrences

I never really worried about a Cushing's recurrence until I started the message boards and saw how many members had recurrences or surgery was unsuccessful the first time.  I had my Cushing's so long ago (surgery was 1987) and I was told then that the chances of having my tumor come back were so slim.  I knew then that if I did have a recurrence, they could do another surgery, then it would be gamma knife or radiation - my memory fails me.

I decided early on that I would never have gamma knife or stereotactic radiation.  I would have a BLA instead.  A bilateral adrenalectomy sounded MUCH more pleasant and I'd know the results right away rather than suffering for another year to see if the radiation worked.

Luckily, I've never had to make this kind of decision although I know lots of Cushies have.

The kidney cancer is a whole other ballpark, though.  I worry about recurrences, metastasizes and other stuff nearly all the time.  On the anniversary o f my diagnosis, of my surgery, when there are scans, when I just see my nephrologist, when I have any kind of pain in my abdomen.  That adds up to several times a year.

I just got my latest issue of Coping Magazine (it's free for patients!  Sign up at www.copingmag.com )  and the first article was Coping with the Fear of Recurrence.

I loved this quote: "Living through cancer treatment can be the horror, but for some, living with the fear of recurrence is even worse."

This is so true, especially for me and my cancer.  With Cushing's, I had 5 years to try to get diagnosed and think of the implications.  With cancer, I went to the ER in horrendous pain and knew within a couple hours that I had cancer.  No going from doctor to doctor, no scheduling test after test, no worrying what it could be.

So, I do most of my worrying now.  I was very brave between the diagnosis and surgery. I wanted this thing out.  Now.

But lab reports tell me it was already hemorrhaging around the edges and I have lung nodules.  Will these come back to haunt me.  How soon?  Am I free of cancer or is it just biding it's time, ready to reveal itself at some time when I'm least expecting it?

I know I'm lucky.  I've survived two things I wasn't "supposed to have".  What does the future bring?

In Memory of Natalie

Click below to see the letter sent in memory of Natalie Fay to Cushing's Help.

Lurking through life

I think I said that another post was the last "golden oldie" but I've located another one from June 9, 2007!

I don't know if any of you read my external blog [MaryO Note: the one that the hackers got] or not, but if you do, you can skip this - mostly old stuff.

It's kind of weird, but I feel like I don't really "belong" anywhere. When I was first online, I spent a lot of time on Power Surge on AOL, later on the web. I've kind of outgrown that site, being past menopause.

But the women of PS are so much younger now, and I've said everything that was meant for me to say, so I lurk…

Out of Power Surge, came the idea to start the Cushing's Help site and later the message boards. I feel like I've said everything that there was to say there, too, especially since my surgery was nearly 20 years ago now. I don't remember most of the tests I had and my "numbers" are most certainly forgotten, if I ever knew. Who'd have thought that all these years later I would know anyone else with Cushing's? But I mainly lurk there now, too. The only thing I have to contribute is news items.

Then, of course, the cancer came along and that makes me feel really out of control. I'm on a cancer listserv but I don't contribute there, either, because I feel like I don't know enough.

How is it I manage to lurk everywhere, site on the sidelines of life, and don't really feel like I belong anywhere?

And I still feel that way to a great extent. I don't post much anywhere about how I'm feeling. But it sure is weird to spend so many hours a day working on a site/boards and not feel a part anymore.

I feel like my combo of "stuff" is something that I don't share with anyone else. No one probably wants to hear about my cancer fears or my fatigue issues (again!) I tried posting some of my cancer stuff as a blog but didn't get very far. Eventually, there was no response, so I locked it so I wouldn't feel hurt about that, too. I'm GH deficient but can't take growth hormone so I don't even fit into that category, either.

Boy, is this turning into a Pity Party! Sorry…time to stop!

Then, I got a comment from someone who wrote:

"MAYBE JUST FOCUS ON SOMETHING POSITIVE FOR A CHANGE………..THERE MUST BE SOMETHING! INSTEAD OF DWELLING ON ALL THAT IS WRONG IN YOUR LIFE……..GO AFTER SOMETHING THAT YOU WANT. DO SOMETHING CONSTRUCTIVE FOR YOURSELF……..DON'T WORRY ABOUT HELPING OTHERS BY TELLING YOUR STORY ABOUT WHAT IS WRONG WITH YOU. DO SOMETHING TO MAKE THINGS RIGHT WITHIN YOURSELF - THROW SOME SEEDS ON THE LAWN FOR THE BIRDS, DIVIDE THE OVERGROWN PERENNIALS, PAINT A FENCE. IF YOU GET TIRED, FINISH IT LATER. MAKE YOUR SELF BUSY WITH SOMETHING OTHER THAN COMPLAINING ALL THE TIME. PURSUE A PASSION, ANYTHING"

Sheesh! I complain all the time and I should make myself busy?!?

I should be getting excited about an upcoming cruise but there's a bit of a delay with one of the pieces of paper we need to take and I'm getting concerned about that. The cruise is less than 2 weeks away and we should have had this document 3-4 weeks ahead of time. I called last week and someone was "working on it". Called again yesterday and got no response, no response to my email, either.

I mentioned this to my husband and he put up his hand and said "Stop". He might as well have hit me. How can he tell me to stop talking, especially about something that potentially affects this trip?

Anyway, when I stopped talking - about everything - he complained that I shouldn't treat him like this. Hello?

So... I have no online friends anymore, can't talk to my husband, counselor is out of town, real life friends are away or unavailable, Sue is dead. I might as well be a hermit.

Nobody wants to even hear about the cancer - it was "gone" last year so why worry? So I have to keep my fears about recurrence and mets to myself. Everything is always "fine".

Just like the original blog title - I'm Lurking Through Life and feeling like crap.

Cushing's and Music

I just read a blog post tonight from one of the Cushing's message board members, Judy, who has 2 kids with Cushing's.

She posted about music:

I'm sitting here listening to the soundtrack of Juno. It's a little different. It almost sounds like folk music, the words are anything but! Jess & I rented this movie one night. I was surprised at how much I liked the music. I finally just bought it off iTunes. I go through spells of listening to it almost nonstop. I find the words fascinating. I think alot of the words remind me of Cushing's, which really seems to do a number on the mind. I think when I really get into the Cushie thoughts and feeling so bad for everyone that has it, is when I play the music alot.

Originally the songs made me think of Justin. He has had a rough time mentally & it's so hard to see your child like this.

So, sometimes I just sit here and listen to the music and some of it makes me cry. Some of it reminds me of Cushing's support board members.

You know how sometimes you hear an old song and immediately have a rush of feelings from some previous time in your life. I know that if I was to hear one of these songs in twenty years or so, it would probably bring me to tears. There's no way I would associate these songs with anything but Cushing's now.

And that reminded me of Jackie's bio. Jackie has 2 kids who have had Cushing's surgery as well. In her bio she says of her daughter:

She fell asleep to Ryan Adams "Stars go Blue"...she would scream until I repeated the song over and over and over.... She would hold her head and cry and cry... finally to sleep for two hours... then repeat.... She still woke up every two hours and demanded 'her song' to get to sleep.

...I can hear Sam's CD still playing upstairs where she left it on... I swear to God it's playing Ryan Adams "Stars Go Blue".

Maybe this is a normal, non-Cushie thing to have music related to parts of your life. I don't know normal anymore, though. I've been Cushie for over 25 years now. Unfortunately, this is my "normal" and, apparently the normal of other people.

When I was testing, I had tapes which I wore out because I listened constantly. When I was in NIH for 6 weeks prior to surgery, I listened to those tapes. Most people watched TV. I knit and listened. Sometimes I even listened during testing.

I would love to be able to replace those long-worn out tapes with CDs or have them on my iPod but I don't know if listening again would make me relive those days of constant testing, stress and fear. I've read that reliving events from the past can be as stressful as the actual event and I sure don't want that!

By the time I got to my nephrectomy, I had an iPod I was listening to all the time while my roommates watched TV. Similar music, different device.

Music has always been my friend, my rock in times of need, whether playing or listening.

Maybe I'll have to check out the soundtrack to Juno!

2:30 - The Dental Time

Ok, my teeth weren't hurting but it was time to go back.

I have put off going to the dentist for a couple years and I have a couple things that really need to be taken care of and I'm terrified.

When I was a child, the dentist tried a new thing on me - drilling cavities with only a headset to keep out the noise. I wasn't supposed to feel any pain that way. I was feeling pain and kept turning up the sound to try to help. The dentist could also hear my music and he didn't like it so loud so he would turn it down and I would turn it up.

Finally, I bit him.

He sent me out of his office and told my parents never to bring me back. Instead of supporting me, my parents were mortified, I was punished and I never went back to any dentist until I was in High School.

Since then, I've done ok, but I have a really small mouth and a very big gag reflex.

In spring, 2006, I was eating GrapeNuts, the hard kind, and cracked my bottom tooth. That left ragged edges and scratched the underside of my tongue and cheek during the night. Felt like my tongue was swollen on the underside.

Naturally, this was the one weekend that my dentist was out of town. I saw some substitute dentist on Monday morning.

Swallowing hurt, and I think I was talking funny (Julia would say funniER, especially if the dentist was from New York!)

Actually, my tooth didn't hurt at all, but it was the jagged edge that was cutting under my tongue, making it hard to talk, swallow and eat.

Probably this incident set off several others, too.

Monday morning I was nervous about this upcoming dental stuff, worried about Sue (who had lung cancer at the time) and other things. I woke up on Monday with a mild sciatica attack and a stomach ache from living on soft pudding and such.

When I got to the dentist's office, his whole front parking area was torn up, construction vehicles everywhere. There was a big sign, a floppy one, blowing in the wind, that was hard to read but I could see something about parking in the back so I turned the corner looking for a back way in.

Naturally, the office complex said NO Parking for Dr J's office. So I kept going. Ended up back where I started from and called the dentist. Turns out I was supposed to weave through the construction equipment and workers. In the back was very little parking so I squeezed my car into a place where I was sure it would be hit by someone else backing out. Fortunately, that didn't happen.

The doctor shaved down the tooth some so the scraping wouldn't continue and put down some kind of plastic sedative film over the whole thing until the real work could start. They couldn't do a whole x-ray because of the pain under my tongue. So they're not sure if I need a root canal or not - I would bet any money that I do, since that's more $$$ for the dentist. They wanted to put in an implant for $3,500 but insurance doesn't cover any of that. The root canal sounds like a bargain. That was to be a 2-hour appointment in March, 2006.

So I left there, still not able to talk much because of my tongue, and went to my mother's to try to convince her to cancel my piano students for the afternoon. By then I couldn't talk and I was limping from the sciatica which was getting worse.

A friend of mine gives me her old Wall Street Journals to give to my mom. I thought that taking those up to her would be a good bribe so she'd call my students. She hates making calls almost as much as I do.

Taking the papers out of the car, I somehow managed to hit my eye with the corner of the stack of newspapers. Now my eye wass in pain, tearing and it was hard to see.

So, I limped up 3 flights of stairs, half-blind, sore mouth, mild stomach ache. I promised my mom that it would be mostly answering machines - no worries about talking to actual people. Of course, you know that only one turned out to be a machine!

Went home, took a much-needed nap.

Tuesday, I woke up in excruciating pain from the sciatica. It was the worst I had ever had this. I called my doctor's office and luckily he was able to see me. He thought that all the stress that's going on right now contributed, as well as sitting in that dentist chair all tense.

Finally, I had 2 new meds to make everything a little better, but they knocked me out and made me dizzy.

But things were getting better. My eye stopped watering and I ccould see again. I wasn't getting any more cuts under my tongue. And I could take my meds and go back to sleep.

I made the followup dental appointment and planned to go but then Sue died. I had thought that I would be going to her funeral and so on, so I canceled that appointment.

Then, the tooth seemed fine, so I put it off.

Then, in late April 2006, I found out I had cancer myself with surgery in early May. One of my diagnostic tests was a bone scan to be sure that there was no cancer in my bones. The next evening, I was playing handbells during a rehearsal and a crown just fell off. I figure the radioactive stuff or something made the bond weaker.

Sometime in June or July a crown on the other side came off. Eewww.

I figured the cancer was bad enough so I was taking the year off from my dental woes. I wasn't even sure I was going to survive the year!

So, here we are in July 2008. The receptionist had called to schedule my husband (who wasn't home, of course!) so I bit the bullet - no pun intended - and said that I was about 2 years overdue. I told her about the gag reflex and that I needed to have sedation.

So, the check-up, cleaning, X-Rays, estimate and all took place this afternoon. There were no problems that I didn't already know about - the missing crowns and such. Estimated cost, over $8,000. Part will be done this year (maybe! maybe I can draw this out another couple years...) and part next to take advantage of insurance.

Thank goodness there's no pain, and there weren't any new problems!

Itching

I'm not sure what's going on. Back when I was going through perimenopause (the real deal, not the phoney Cushing's version) one of my main symptoms was itching. Formication with an M. Random, everywhere, keeping me awake at night, embarrassing me when I was teaching. It really does feel like ants crawling all over - hence that formication name.

(From Wikipedia:

Formication is a somewhat unusual, but medically well-known, abnormal sensation. This sensation closely resembles the feeling of insects crawling on and/or under the skin, and can also include sensations which resemble those of insects stinging or biting. There are many known causes of formication.

The word is derived etymologically from the Latin word formica, meaning "ant", precisely because of this similarity in sensation to that of crawling insects.

Formication is a specific form of the general set of abnormal skin sensations known as paresthesia, and thus it is related to the sensation known as "pins and needles", and other tingling sensations.

Some people suffering the sensation of formication find it to be annoying, others find it painful, and some find it itchy. Those who find it to be itchy may in some cases repeatedly scratch themselves until they bleed, causing skin damage and sores. (In the subset of cases where the sufferer is delirious or intoxicated because of high fever, substance abuse, or extreme alcohol withdrawal, this repeated scratching is very common indeed.)

Formication can on occasion lead to people becoming fixated on the sensation and its possible meaning, and these people may develop delusional parasitosis. This is a situation where individuals are convinced that there are real insects crawling on and/or under their skin, whereas in reality there are no insects involved, just a crawling sensation. It is fairly easy to misunderstand the significance and causality of the "creepy crawly" sensation of formication.)

During the meno phase, this itching went away when I started on HRT. When I went off the HRT and onto soy shakes I was concerned that the itching might come back. If it had, I'd have gone back on the HRT.

So, fast forward 8 or so years and it's back. I'm assuming it's a hormone thing again but I'd better not be going through menopause a 3rd time. Sheesh! Always something!

Technorati Tags: Cushing's,formication,hormone,itching, HRT,menopause,perimenopause,soy

New guidelines for the diagnosis of Cushing’s

http://endocrinetoday.com/comments.aspx?rid=29382

New guidelines for the diagnosis of Cushing’s

Posted by Michael Kleerekoper, MD, MACE July 7, 2008 07:37 AM

The Endocrine Society has just published new clinical guidelines for the diagnosis of Cushing’s syndrome.

The first recommendation is key: before any testing, obtain a complete drug history for any use of steroid preparations. I just spent three months on a Cushing’s workup before my patient asked whether the spinal injections he was getting every three months for control of back pain might be why the laboratory results weren’t making sense to me!

Consider Cushing’s in patients with unexpected osteoporosis or new onset hypertension, those with highly suggestive clinical features, and those with an adrenal incidentaloma.

For the initial testing the recommendations are 24 hour urine free cortisol (x2), or late night salivary cortisol (x2), or an overnight 1 mg dexamethasone suppression test. Few patients enjoy collecting urine in a bottle for 24 hours let alone twice. The overnight DST is straightforward but does require the patient to go the pharmacy for the tablet and present to the laboratory for blood work between 8 and 9 a.m. the next morning.

The late night salivary cortisol test is the most recently developed of the tests and seems the easiest for patients. On two separate occasions have the patient drool (yes that’s the word used in the guidelines) into a plastic tube. The sample is stable at room temperature for several weeks (I would not recommend waiting that long) and can be mailed to the testing laboratory.

As with all laboratory tests, be careful that specimens collected on separate days are sent to the same testing lab — assay methods and reference intervals do vary.

The guidelines, which are evidence based and very easy to read and follow, provide many more important details about both the initial screening I have just summarized and subsequent follow-up for positive or equivocal results.

 

Technorati Tags: adrenal incidentaloma,cortisol,Cushing's,dexamethasone suppression,hypertension,osteoporosis,salivary

I'm testing my new tiny computer

I just got an Asus eee 900 computer, partly because my son got one and it was so cute...and small! I'm always looking for smaller laptops especially for traveling. I debated with myself for a long time. Linux or XP. The XP version had less hard drive space but I plan to bring all my Cushing's and other files on jump drives anyway.

When I got a coupon for $100 off the already very reasonable price...I was sold! $450 for a 2 pound computer. And no Vista. A definite plus.

This thing could fit in my purse and I could take it everywhere. Maybe I will! My son says he takes his all over the place.

One of the programs pre-installed on this is Windows Live Writer. I'm composing this entry using this program to see how/if it works. I deleted a lot of the other stuff I know I'll never use.

Addition:

I was playing around with it and it also has a little camera should I ever want to take a picture of myself using the computer AND it has a webcam! You can use it to take videos or you can use it in comjunction with something like Skype so...I now have a Skype account. Maybe my son and I can do video chats. LOL

Who knows what else I will find today...

There are a ton of reviews at Amazon.com and I think I've read them all.

There is already a 901 which has a bit more stuff than I got, same HD size, though. That does have a larger battery but I'd already ordered one on eBay. Since my new eBay battery is $51 (and more powerful than the one that comes with the 901) and with the rebate my computer is $150 cheaper, I still come out ahead!

Also, they now have a 1000 which has an 80 GB hard drive BUT it weighs a bit over a pound more than mine. And that's approaching my last "light" computer. So, it's a trade-off again - weight VS hard drive size. I think when I'm taking this travelling I'll very much appreciate not having the extra pound.

Kidney Cancer Journey (Golden Oldies)

These are extracted from posts that were made during my kidney cancer diagnosis and surgery in 2006:

From Alice April 29, 2006

This is Mary's friend, Alice (Dearest of Power Surge).

I'm not going to go into every detail at this time. I will fill you in on more details as I receive them from Mary and Tom. I'm sure Mary posted on the boards that she recently went back to Johns Hopkins in Baltimore to be retested because the tests that had been done the past year were incorrect and she was getting the wrong dose of hGh for the past year. In any event, she was tested again on Thursday and then returned home. The above is just a preface to create a time frame of events. It isn't the reason I've come here to ask for prayers for Mary.

This is: Mary mentioned to me last week that she had noticed some blood in her urine. She was going to get it checked. As it were, when she returned from Johns Hopkins, she drove her husband, Tom, to get his regular biopsy for his history of prostate cancer.

While in the emergency room, Mary started having cramps in her stomach and when she went to the rest room, discovered a great deal more blood in her urine. Fortunately, she was at the hospital with her husband when this occurred. The cramps were becoming more severe. The doctors checked her out and they found a tumor in one of her kidneys - the tumor is actually the size of the kidney.

At this point and time, the doctors are recommending removal of the kidney and one of her adrenal glands. One surgeon recommended immediate removal of the kidney. Mary and Tom wanted to first talk with her other doctors and will decide on what surgeon performs the surgery. She never left the hospital where she simply went to take Tom for his test. Instead, she was admitted. She had a great deal of pain last night, but it was helped with pain killers. I will provide hospital details later.

She's scheduled for an MRI later this morning or early afternoon.

I don't want to go into much more detail except to say that whatever the condition of the tumor, the prognosis is pretty good.

I know how much all of you love her (as I do), how much she's done with this site, how hard she's worked to provide you with so much wonderful information about Cushing's -- plus what a good friend she's been to so many of you. I also know that those of you who talk to her may want to call her. She needs time to go through all the preliminaries before being inundated with calls.

I will do my best to keep you apprised of Mary's situation as I receive information. When she gives me the go ahead for giving out the hospital and is ready to take calls, I'll pass the information along.

Please take a moment to send prayers for {{{{{MaryO}}}}} (she's "our" MaryO on Power Surge, too) that everything will turn out all right and she will get through this crisis with flying colors.

Dearest

~~~~~~~~~~~~~~~

From Alice April 30, 2006

* Addendum: 9:30 AM - made some corrections to the 5 something AM post.

What a beautiful show of love and support.

I spoke to Mary last night. She had the MRI as scheduled. She spoke with her own doctor and they decided on a surgeon, but it means going to another hospital. She said she'd probably be coming home for a day before going in for the surgery.

I hesitated to mention in my first post that the doctors said they * think the kidney tumor is malignant due to it's size - 5 cm. I'm sure many of you surmised that, or why would the emergency room doctors recommend immediate surgery. However, as I said earlier, Mary and Tom wanted to consult with her own doctor first. She was told that if, in fact, it is kidney cancer and is detected and treated early and confined to the kidney, the chances for a full recovery are good.

Considering what she's going through, Mary sounded good. Lord knows, she's been through so much already. God willing, this may resolve some of the other health issues she's been experiencing.

Knowing Mary, when she returns home for a day before checking into the other hospital for surgery, if she's up to it, she'll post here herself and provide you with additional details.

For now, I've told you just about all I know.

Keep up those prayers!

Alice

~~~~~~~~~~~~~~~~~~~~~~~~~~

From Alice April 30, 2006
11 AM Update:

Mary had a brain scan this morning. She was supposed to have a bone scan today as well, but they're doing it tomorrow instead, so they told her she could GO HOME TODAY (until she checks into the other hospital for the surgery)! She's thrilled to be going home and I'm sure she'll be here posting to all of you herself. You know Mary can't stay away from computers very long. I'd venture a guess that if they looked inside, her arteries and veins would look more like computer cables (ducking).

We love Mary - so keep on praying that everything goes well, that the tests all yield good results and that she'll be getting better 'n better until she's finished with this whole ordeal

(please, God!)

Reminds me of the phrase . . .

Good, better, best
Never let it rest
Til the good is better
And the better, BEST!

Alice

~~~~~~~~~~~~~~~~~~~~~~~~~~

From Alice April 30, 2006

Update - 2:15 PM:

Spoke with Mary. She's home. She's resting. The brain scan, chest/lung x-ray, abdominal scan all came out clean. The only test remaining that I know of is the bone scan, but it's excellent that the above tests yielded good results.

She's going back to the hospital for the bone scan tomorrow and, hopefully, scheduled for surgery ASAP.

Her attitude is very good. She sounds very good and I know, with God watching over her, and everyone showing so much love and caring, she'll pull through this with flying colors.

It's easier for me in conveying information to you to do so with an upbeat attitude. I try to avoid thinking of these things as tragedies or things that make me sick. Of course, I'm saddened and sorry that Mary is going through this -- and has gone through so much, but such is life. You all certainly know that very well. Nobody hands us a guarantee that life is going to be without problems. And, yes, as the Morton's salt container says, It never rains, it pours. But my M.O. is to try to keep as positive as possible, especially when in the throes of life's unanticipated crises.

I believe the expression, "Attitude" is half the battle won.

Mary's attitude is excellent and I know in my heart she's going to come through this just fine.

Alice

P.S. An expression I remember my mother using, "The things we fear never happen. It's the things we never think about that do!"

~~~~~~~~~~~~~~~~~~~~~~~~~~

From Alice May 2, 2006

There wasn't much to add yesterday. Mary was scheduled for a bone scan, but first had to have the radioactive tracer substance injection (I presume it was injected -- she wasn't sure herself). She was scheduled to have that around 10:30-11 AM, ET, and then had to return five hours later for the bone scan.

I didn't speak with her last night, but she text messaged me around 6:30 that she was finally home and that the surgery had been scheduled for a week from today, Tuesday, May 9th at 9:30 AM.

I'll post the hospital information as the time draws near.

That's about it for now. She's still sounding pretty good and wants to get the surgery done already!

Let's keep those prayers going!

Alice

~~~~~~~~~~~~~~~~~~~~~~

From Me May 2, 2006

First off, I'd like to thank you all for your good wishes, support and prayers. I could do the Sally Field thing and say "...and I can't deny the fact that you like me, right now, you like me!" but I won't smile.gif

I plan to print everything out and take it with me to the hospital as a cheery-upper.

Alice has been such a wonderful friend through all this, calling, checking up on me, keeping all of you updated on things as they are known right now. Her support and love has been such a wonderful blessing in my life, especially now.

As it is, I'm currently feeling "normal" whatever that is. If I didn't know I had a problem, I would think that I was just fine.

I am fortunate that I found this out before the tumor could grow any larger. I am fortunate that I was close to the ER, not driving home from Baltimore, or in Baltimore, Oklahoma or on the cruise.

I know that the tumor has been growing for quite a while - it's very large. I saw the MRI images and even I can tell that it's not normal. As far as I know now, all the other scans have been fine. I had an abdomen CT, chest CT, brain MRI, chest/abdomen MRI and a full body bone scan.

When I was in the ER Friday, they assumed that it was a kidney stone and did the first abdomenal CT scan looking to see where that was. They came back with the news that yes, I had a kidney stone but that it was the least of my worries at them moment. So, I was admitted to the hospital and had all the other scans except the bone scan. Knowing what I know now, it would have been better and easier for me to have had the bone scan as an inpatient. As soon as I checked out and was out of the system, it was harder to get an "emergency" (not scheduled weeks in advance) bone scan. Oh, well.

My surgery will be next Tuesday, May 9, at 9:30AM at Fairfax Hospital ( http://www.inova.org/inovapublic.srt/ifh/index.jsp ). I'm expected to stay there for 3-5 days post op and they don't anticipate any pesky complications like chemo or radiation at this time.

For now, I'm keeping my normal schedule, avoiding reading horror stories online, eating, sleeping - even napping! - as usual. Sometimes I even forget that I have this little medical appointment next week.

For a non-phone person I've talked with so many people these last few days, it's mind-boggling.

I'm happy to report that all is not lost on the cruise. Someone will replace me - and there will be another cruise later in the year. YEA! My main "concern" on that now is that I'll lose weight (finally!) post-op and my cruisewear will no longer fit. Yeah, right.

In thinking back, I think it's a good thing that my arginine test was messed up in Sept of 05. If it hadn't been, I wouldn't have redone it on Thursday. I believe that having that stuff in my body was what made my kidneys rebel and act up on Friday. So, without the lab screw-up I might not have known anything for a long time.

So, it's all good

Thanks to everyone who has called and posted such wonderful things. I cannot begin to imagine what my email looks like...

~~~~~~~~~~~~~~~~~~~~

From Alice May 9, 2006, 09:10 AM

I've been in constant contact with Mary. Spoke to her at 7 this morning. She, Tom and their son, Michael, were on the way to the hospital. Mary sounded very good as she has all week. She's going in with an excellent attitude.

She's probably being prepped right now. The surgery is set for for 9:30 (ET). They anticipate the surgery will last 3 1/2 - 4 hours.

Now, all we can do is pray and wait. Tom will call me after the surgery is over. As soon as I hear something, I'll make it a point to come back and post what I know.

Your support, love and prayers have been remarkable. Thank you on behalf of Mary. Please keep on praying until it's over.

God? You listening? You've got someone very special to watch over this morning. We're counting on you!

Alice

~~~~~~~~~~~~~~~~~~~

From Alice May 9, 2006, 12:33 PM

Mary's husband, Tom, called me at 12:15

He said it's going to be another 3 hours - around 3:15 PM - before they're done. Surgery didn't start as scheduled at 9:30, but more like 11:30. There wasn't that much he could tell me except that the doctors said, so far everything is going as expected and Tom said, "so far, so good."

I hesitate to draw any conclusions from that statement because I'm not 100% sure of what the doctors expected, so it's a matter of waiting until it's over.

I'll keep you posted. Keep praying, please!

Alice

~~~~~~~~~~~~~~~~~~

From Alice May 9, 2006, 2:00PM

Tom called at 1:15, but we had a bad connection. We finally connected.

The operation is over. Mary was being sewn up. Tom said according to the doctor, "the tumor and the kidney were removed." The doctor is calling the operation a "complete success."

I asked if they saw any signs of cancer anywhere else because Mary had told me originally that they'd said they might remove the gall bladder, too, but they didn't remove the gall bladder - which is a good sign.

It appears as though everything was concentrated in the kidney.

Thank God. It's over!

Alice

~~~~~~~~~~~~~~~~~~~~~~~~

From Alice May 9 2006, 07:39 PM

Someone said: ... I told her that I would wait until she was home and feeling much better before I talked to her again and she agreed that she wasn't sure she would be up to taking phone calls. Again, thank you so much for keeping us updated... this way we can know how Mary is doing without her having to take so many calls...

That's exactly how Tom and I feel. Tom suggests people not call the hospital. I wouldn't even call his cell phone all day. I waited for him to contact me. I know he's also exhausted. I figured he'd call when he was up to it. He called about 15 minutes ago.

It's important that Mary get all the rest she can while recovering. Yes, everything turned out well, but she still had major surgery, is on morphine and needs her sleep. It's important that we all allow her this time to rest.

It just so happened she was awake when he called and he turned on his cell phone's speakerphone so Mary and I could talk for a minute. I was so happy to hear her voice. She sounded tired, her mouth was dry, but she sounded good.

Because this is a public message board, I prefer not to post details of the room she's in. If anyone wants this information for the purpose of sending something to Mary, please E.mail me from the address you registered with on the board, and please include your user name. Thanks.

Another thing is that Mary has allergies, so for those wishing to send something to her, Tom and I (and Mary, as we discussed before she went into the hospital) agree she's better off without flowers.

Finally, Tom said the doctor was very pleased with how her surgery went - that her body was quite robust, that there was very little bleeding, so no transfusion was needed, and he was generally very pleased with the surgery.

It's been a very stressful day. I love Mary like a sister. We've been good friends for 11 years. I cried so after he initially called and said everything went well. I know all of you love and care about Mary, too.

All I've thought all day is, thank you, God, for watching over MaryO. I know all of you have thought the same thing.

That's about it for now -- she even cracked a personal joke when we said goodbye -- she'll be back to her old self again before too long.

Alice

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

From Alice May 13 2006, 08:10 PM

Saturday Update on Mary:

When she's back on her computer, I know Mary will be thrilled to read all your thoughtful, beautiful and caring messages.

She's doing well. The worst part is the incision which is quite large because the doctors originally anticipated the possibility of having to remove the adrenal gland above the kidney that was removed and the gall bladder as well. However, as I posted earlier, once they got in there, everything was found to be clean so they just took out the tumor and the kidney (as if that's not enough). So, when she gets up to go to the bathroom, the incision is quite painful. I imagine an incision of that size will take a while to heal. Other than that she says she feels good!!

Additionally, the doctor was awaiting the results of the lymph node biopsy (just to be sure) and he told her yesterday, "everything looks clean."

She was originally scheduled to go home tomorrow, Sunday, but . . . she went home TODAY!

Spoke to her after she arrived home (sorry I didn't post earlier, but also have my Web site to deal with).
She sounded great and was glad to be home especially since a new person checked into her room yesterday and Mary wasn't able to sleep all night.

That's all for now - and all very good news, thank God!

Alice

~~~~~~~~~~~~~~~~~~~~~~~~~


From Me: June 17, 2006 post-op:

Thank you all for your prayers, good wishes, cards, phone calls, gifts, general "cheery-uppers". They all really helped me on my road to recovery.

I do have a ton of thank you cards to send out to lots of people - I'm very slow at that sad.gif Under normal circumstances my handwriting is terrible. Now, post-op kidney cancer, I can no longer take my arthritis meds or any NSAIDs and my writing will probably be even worse sad.gif

I am very nearly better, not much pain anymore, a nasty big scar and my energy levels aren't so great. Of course, they were awful before. I can no longer take the GH even though I'm deficient. In 5 years (if I survive!) I can take the GH again, supposedly.

I've had a lot of time to do a lot of thinking over the last 6 weeks. I know I was extraordinarily lucky to have my tumor discovered before it was too late. The lab reports and my surgeon reported that it would only have been a week or so before the tumor had hemorrhaged and caused major problems. Thank goodness the argenine retest for GH had caused me to bleed - at least I think that's what set it off. If I hadn't had all the blood and pain for one day only, I'd have had no clue that I had this cancer and who knows what would have happened in that next week.

I will be getting CT scans every 3 months for awhile to be sure that there is no cancer hiding out.

During my time of thinking, I have also been thinking about making changes to the boards based on what I have heard was going on here. I am not yet sure how these changes will manifest themselves but I do know that bashing others will not be tolerated. More on this later, in another area.

Again, thank you for all your support!

~~~~~~~~~~~~~~~~~~~

From Me July 6, 2006

Since I recently had surgery for kidney cancer, I've been looking around for another board to read and talk about this with other survivors (hopefully!) I haven't found anyplace I'd like to visit or feel comfortable with yet, so I decided to make a new area here.

I know - or I think I know - that no one else here has had kidney cancer, although I know at least 1 other person has had a kidney removed and several others have reported kidney stones and other possible kidney diseases.

I'm sure that my recovery will be much the same as for any other major abdominal surgery, although I'd like it to be faster.

Before my surgery, I didn't have time really to consider that I had cancer, and what it meant for my life. There was no going from doctor to doctor, running a different test each week, suspecting that maybe... Just boom, there it is. Cancer.

Now that I'm about 8 weeks post-op, I'm thinking more and more about this and how it might affect my future. I know that there are going to be lots of scans, every 3 months, just to be sure that there wasn't a cell hiding out.

I know I have to be careful with meds - no NSAIDs so my arthritis is worse. No GH - it's contraindicated for 5 years...assuming I'm cancer free then.

I'm supposed to be eating less protein, more fruits/veggies, drinking more water.

And I'm supposed to avoid playing football and other things that might damage my remaining kidney.

Normally, I know how very lucky I am. I just reread the path reports and know that the tumor was already hemorrhaging around the borders and the cysts contained hemorrhagic fluid. Things could be much worse.

Sometimes, at night when I can't sleep, I wonder why I was lucky like this. What haven't I done with my life that I should. Seems to me that I've accomplished what I should already.

And, in the night, I worry about the cancer returning, taking my other kidney or worse.

At this time, there's no standard chemo unless it's metastasized, although there are some promising clinical trials and radiation doesn't seem to work for this kind of cancer, so if it returns it's more surgery.

I suppose I could/should have put all this in my blog, but I put it out here in case anyone else should need this in the future. I hope not!

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

From me Aug 19 2006, 01:25 AM

Thanks so much for asking!

Unfortunately, I haven't read the boards much lately - I'm spending most of my online time deleting/banning the InstaChat intruders.

I have been working on the websites, though, and that's always fun! I've even added a new one to the roster and it has some cool stuff on it. New features to be announced in the upcoming newsletter.

I've been even more tired than usual now that I'm off GH. I can't take my arthritis meds, or anything like Excedrin (no NSAIDs) so my joints are nearly always bothering me and I have to wait out any headaches. I'm also just getting over a UTI.

I just had my 3 month post-op CT scans and I hope they come out ok. At first I was grateful that I wouldn't have to have chemo or radiation come to find out that neither has been discovered yet which works well with kidney cancer. Apparently, it can resurface any time for the rest of my life. I'm hoping that some of the chemo clinical trials show some good results so I can get this thing before it metastasizes somewhere.

I'm having trouble sleeping (1:20 AM here, now) although I'm always tired. My mind plays all kinds of tricks in the night. Those InstaChat people don't help, either! When I wake up just a little, instead of falling back asleep, I'll go check to see what they've done.

Whine, whine!

On the plus side - I survived the kidney cancer surgery, and it's almost vacation time!

Even vacation will be bittersweet, though. 2 years ago, Sue went with us on vacation. She had a great time and she had asked if she could go with us again this year. Of course, we had said yes...

~~~~~~~~~~~~~~~~~~~~~~~

From me May 8 2008, 11:07 PM


I am feeling very maudlin, a bit down and depressed. It's very nearly the anniversary of my kidney cancer surgery. I posted this in my blog a few days ago:

I’ve been feeling weird for about a week now. Last Friday, I went through the whole “Sending Prayers” topic (MKO'Note: this thread) that my good friend Alice started for me.

After I read that, I started reliving all the kidney cancer events…again. I know I shouldn’t do this. My counselor says that this is a very stressful thing to do and it’s not good for me, for anyone. But I do it anyway, especially the pituitary and cancer surgery anniversaries. I wish I did this with good stuff, could relive that instead of the scary and painful.

After I finished rereading all that, I went back to my post in the cancer section: I guess I’ve talked about this more than I think! I just wish there was someone I could get answers and support from. I have never met anyone in real life who has shared my particular brand of cancer, haven’t talked to anyone on the phone or emailed anyone.



I even asked at my local cancer support center about support for me - they have all kinds of meetings, mainly for breast and prostate cancer, but other kinds, too. But they said that there weren’t enough kidney cancer people to have a meeting. The one and only book that the library there has on kidney cancer was given to me by the author to donate there.

Lucky me - two rare diseases that no one gets. According to statistics I should be a black man who smokes and works in the iron and steel industry or is exposed to certain chemical and substances, such as asbestos (a mineral fiber that can be used in construction materials for insulation and as fire-retardant) and cadmium (a rare, soft, bluish-white chemical element used in batteries and plastic industry), also increase the risk for renal cell carcinoma. I should have polycystic kidneys and not drink the copious coffee.

So…where did it come from? A mutation of my parents’ and aunt’s colon cancer or do I still have that looming on my horizon?

And the Cushing’s came from nowhere, too. I know that no one knows these answers but I think of them a lot, especially at night.

Although I’m not afraid of death and would like it to be as peaceful and pain-free as possible, I still dream at night that I’m dying or have died. These dreams have been going on since before the cancer and I can’t seem to shake them although I’m taking them more in stride now and can go right back to sleep.


And from last year’s post on this topic, these still concern me:

What if the lung nodules that “aren’t growing” turn out to be something on the next scan?Is the stomach distress I’m currently feeling a cause to ask for my next colonoscopy a bit earlier?

Is the pain on the other side the other kidney causing trouble? Or something new with an ovary?

What if, what if…?



Seems like in my addled brain any new symptom could be cancer, not the simple stomach bug or pulled muscle.

Had they told me in 2006 that I only had a year or two to live, I’d have thought it far too short a time. I guess how long a year is depends on the frame of mind!

I hate going for scans because they could show something but I get nervous when there are no scans because there could be something else! Seems like my mind is setting me up for a lose-lose situation.

I’m sure as I get closer to Friday that other thoughts will come to me. I am so grateful that I’ve had these two “bonus years”. I feel like there is so much still to do with the Cushing’s sites and I will never get them done in my lifetime but I plan to keep trucking along!

My husband said he put this anniversary in his PDA and we might go out to do something "special" tomorrow night - that usually means pizza, if he remembers.

I know he, and most of the immediate world have forgotten about this cancer and think that I'm ok, no problems. I always wear both my Cushing's wristband and my kidney cancer band. One time my son asked me what the green band was for. I told him it was for kidney cancer and he asked why I would wear something like that. I reminded him that he came home and spent hours at the hospital while I was in surgery.

I guess it's good that people forget and things are normal. I can't, though. Every ache, every pain, every UTI - is it back? Is it someplace else? What's quietly growing that I don't know about yet? How/when will I find it?

There are so many meds I can't take. Every headache, all arthritis pains, even depression, I have to ride it all out. The only thing I got ok'd by my doctor is Robaxyn for sciatica and that works less than 50% of the time.

I am tired of catering to living with one kidney and one adrenal gland; a scarred pituitary, GH deficiency, adrenal deficiency, finding articles about new kidney cancer drug trials, portable dialysis machines just in case, trying to guess what will protect me from further cancer, what won't.

It's not fair to have two rare diseases like this. But who said life was fair, anyway?


I'll try to be cheerier tomorrow (or Saturday!)...honest!

Trying to go on Growth Hormone, part 2 (Golden Oldies)

Continuation of Trying to go on Growth Hormone (Golden Oldies)

Nov 5, 2004

After all this time, to get so close to getting GH, my insurance company rejected me.

I am not approved or authorized and I don't meet medical criteria necessary and a whole lot of other stuff which indicates that they don't care a bit, even though they call themselves "CareFirst".

So some insurance idiot thinks he knows more about the testing than a Growth Hormone Specialist. Sheesh!

Of course, I got this too late to talk to my case worker at Genentech, but I left her a message on her answering machine. I don't know if she'll understand it, since I was crying so hard.

I hate my life!

~~~~~~~~~~~~~~~~

Nov 22, 2004

I haven't got the stuff yet, and I'm already worried about traveling with it.

I know that the type that my insurance will pay for (Norditropin) doesn't have any preservatives so it can only be unrefrigerated for an hour, then it becomes trash - however much is left in the cartridge.

Those little cooler things with the bricks to freeze that they provide for you - how long do they actually keep the stuff cold?

For car trips, has anyone bought one of those refrigerators that plug into the cigarette lighter and, if so, is there any type that you recommend?

How hard is it to get a refrigerator in a hotel room? I know that there was none in Nashville, unless you asked specifically. If you have one of those car cooler things, can you get it so it plugs into a regular outlet, too?

If flying, will the plane staff put it in one of the plane coolers during the flight?

The things we worry about!

Now I just have to get my hands on the stuff LOL

~~~~~~~~~~~~~~

Mar 4 2005, 12:22 PM

From what I've read, many people here have lost weight on GH. I've gained about 10 pounds since September sad.gif I've been on the GH since Dec. 6, about half that time.

Very little, if any, extra energy. AARRGGH!

Has anyone else gained on GH instead of losing?

~~~~~~~~~~~~~~~

Apr 13 2006 (The night before my kidney cancer diagnosis)

I'm at the hotel, back from my 6-month appointment at Johns Hopkins. When they ran the arginine test for growth hormone over a year ago, they did it wrong sad.gif Not just me, but everyone for a couple years.

This means that I've been on the wrong amount of GH for the whole time. I have to go off for 2 weeks to get it out of my system, be retested the right way and start again.

The way the test instructions are worded, the infusion lab misinterpreted. My endo was doing some GH research, writing a paper and came across this "little" mistake.

So, no wonder I'm not feeling any better like most everyone on here does after starting GH.

Sheesh!

Trying to go on Growth Hormone (Golden Oldies)

From November 20, 2003

Finally, in desperation, I emailed NIH to see if I could take part in a Growth Hormone study. Of course, there's not one going on now, but I took a chance and emailed Dr. Nieman. She said " We'd be happy to re-evaluate you, including a check to see if you need GH. Can you send me any other issues so that I can plan a short admission?"

I spent yesterday trying to gather my "other issues" together. I was shocked to see how many there were that I had listed. And all the time I thought I was just fatigued.

I sent this back to her:

Dr. Nieman, I want to thank you so much for responding to my email. You've given me so much hope again, that maybe there is something that can be done, rather than this watch and see attitude, while I'm always feeling terrible.

You asked about my other issues. I'll mention them chronologically. I realize that many of these can be written off as just aging.

After my 1987 surgery, my facial hair never went away. I still shave daily. Of course, that doesn't help my feelings of feminity much.

Starting with my Cushing's, my libido disappeared, and that has not returned.

Until the last few years, I would take a nap some (not all) days of the week. I reported this to my outside endocrinologist at every visit, how tired I was, that I didn't feel that I was living a normal life. He duly wrote it in his notes and didn't do anything about it.

About 2 years ago, I started sleeping more and more. I find that my maximum awake time is 6 hours a day. I never feel fully awake, fully alive, though. I spend my 6 hours doing easy things like teaching piano or working on the computer. I never feel energetic enough to clean the house or do things with my friends.

When we recently went away for a 3 day weekend, it took the whole next week to recover. I would go to bed normally, get up at about 11 am, because I felt guilty, wander out to the living room to "watch some TV" and fall asleep, only to wake up when my husband came home from work, about 8-9 PM. We would have a dinner that was easy for me to cook, and back to bed.

I feel that I can no longer drive places that take more than 45 minutes to get to - my eyes start closing.

I continued going for my yearly endocrinologist checkups - UFC, bloodwork and he would send me home leaving me to deal with the facial hair, the fatigue, the depression.

About four years ago, he found my cholesterol to be high and started me on Lipitor. That lowered my cholesterol to his satisfaction and I continue to take that. I started going every 3 months to monitor the cholesterol.

In the fall of 1999, he told me that my pituitary gland was starting to shut down and that I would need Growth Hormone "someday" and gave me a prescription for Cortef to take for stress, since he didn't believe that my adrenal glands could handle any extra stress.

He ran the first of my Insulin Tolerance Tests. The Saturday and Sunday after my Friday test, I felt better than I had for 20 years. I a lot of energy and I was flying high. I did a lot of cleaning. I hoped that this was indicative that we now had some answers. Unfortunately, it did not.

I had two more ITTs. I do not know the results, only that I continue to sleep and sleep. Needless to say, this depresses me being so tired, not being able to do even simple things.

About 5 years ago, I lost 45 pounds with the help of Weight Watchers. I gained about 10 pounds of that back over the years. Last fall (2003), my doctor did an electrocardiogram (I think). When I went back to schedule my next Insulin Tolerance Test, he told me that I was setting myself up for a heart attack and that I wasn't worth treating unless I lost 10 pounds over November, December, January. He told me to come back only when I'd lost the 10 pounds.

I left his office in tears and didn't go back.

In the meantime, I see my regular Internist every 3 months to monitor my arthritis medications. About a year ago, he noted that my blood pressure was a little high, and it was every time that I went in. He himself had heart problems and quadruple bypass. He's still out on leave and his replacement checked my blood pressure and found it to be 179 / 105. She put me on a mild diuretic, HCTZ 12.5. Within 2 weeks the BP had gone down some, but not enough for her. She doubled the amount of the medication and I'll go in tomorrow to find out the effect of that.

A friend gave me a picture of my mother and myself that was taken in late September. I was very surprised to see how round, Cushingoid, my face looked, but I thought it was nothing (I did check for a hump, though!). Today, when talking to my mother, she said when SHE saw the picture she thought I looked like I had with Cushing's, too. Others say no, so it may have just been the angle.

Friends have said lately that I don't seem to be reacting normally to events. When there's something I should blow off, I take it to heart, as a fault of mine.

My mind seems more jumbled lately - I have trouble saying the words I intended, and I can't always remember what I want. Again, this could be aging - I'm 55 now. In addition to the depression, I go through periods of feeling worthless, like my life has been wasted.

In real fact, I have accomplished some things - I founded a website to support Cushing's patients, family and friends. The message boards have over eighteen hundred members now. I have always gone to visit members who are in NIH for testing or surgery. There's one member going to NIH on November 30th and I had to tell her I didn't think I could visit, because of my energy levels.

Through this website, a non-profit organization was formed to help educate and support. We have local and national meetings, and just had our first international conference. So, I don't know where the feelings of worthlessness are coming from.

I'm sorry that this is so long, but I wanted to share some of my issues with you.

Thank you again for giving me hope. It's a wonderful gift.

Maybe, finally...