Wednesday, December 31, 2008




This is probably my final post for 2008, unless inspiration hits me again later!

Erin (youth pastor's wife) picked Jess up about an hour ago. The youth groups are hosting a New Years Eve party at the church for the congregation and their guests. They were going to make corn muffins to go with the chili that's being served. I'm sure there will be lots of food and games.

I opted to stay home. I don't feel too social most days.

Looking back on this year it seems pretty eventful but we seem to be right back where we were at this time last year. About ready to set up surgeries (second) for J&J (I hope). But this year, I'm sure we'll also be setting up surgery for Bill too. While there is no official word from Dr. F, I can't believe that he won't be sent to surgery after the IPSS results (posted below) we got today.

I'm hoping that 2009 will be a better year for our family. I'm praying for cures/remission for everyone. I truly can't think of anything else for my wish list.
Jess found this in the fax machine at work today. I wasn't expecting it because when I called UCLA the other day the gal told me it wouldn't be finished until next week. I thought that was a little odd, as the test was done over three weeks ago. I think she was buying time because she didn't know what to tell me when I asked if the results could be faxed to us. She thought they would have to come from our doctor. When I said that last year they had faxed my kids' results, she wasn't quite sure how to respond so she told me she'd have the doctor call me next week. I didn't really think that would happen but I figured that meant I could call back next Monday. So I was a little surprised to find the results today.


These results on Bill Kennedy,........, would indicate a pituitary source for
increased ACTH production with a greater than 2-fold gradient before CRH in the
right IPS (but with a normal cortisol) and a many fold gradient post CRH (at
least in the right inferior petrosal sinus sample). If due to an adenoma, it
would appear to drain into the right with a greater than 10-fold gradient
between right and left. The inferior petrosal sinuses were of similar size, and
normal. Obviously, these results must take into account the patient's clinical
scenario, and there are false positives and possible overlap with normal.

So there we have it. Nothing on the AVS yet and no word from Dr. F. While I was sure the IPSS would show something it's still a little of a shock to actually read it. Before, it was all in our mind, now it's positive.

Monday, December 29, 2008

Received an email from Dr. McC tonight. For some reason I'd thought I might hear from him in the next few days. Probably because I'd heard that most of his office staff was out which I thought meant they weren't keeping their usual schedule and he'd have time to catch up on some things.
Dear Mrs. Kennedy,
Yes, both arrived safely. I am in the
midst of digging through the various piles and have found the packet with the
scans, and looked at them today. Let me address them individually:

For
Justin, his MRI shows ill-defined areas of relative darkening on each lateral
wing of the gland, right and left. You might impute these changes to tumor, but
the problem is that this could simply reflect the fact that we worked on each
side of the gland in performing our removal, and the resulting empty spots can
look like this too. I'm sure that at least some (and perhaps all) of what we see
can come from the postsurgical appearance. This, if there is some tumor and/or
hyperplasia hiding along the edges of where we worked before, you can't tell
easily unless it becomes more clearcut over time. I have to say that my
impression (from seeing the gland at surgery) is that he might end up with a
total hypophysectomy if he comes again to surgery, or something approaching it,
and I would hate to do that in someone as young as he. So, best thing for now is
pursue the redoing of the hormonal workup to try to pin down for sure, is he
showing persisting high cortisols or isn't he. Then some rational choices can be
made.

For Jessica, she shows on her MRI very good emptying of the areas
we removed, the majority on the right but to a lesser extent on the left too.
This is not such a fuzzy picture as the one Justin presents, the edges of the
resection cavities are sharper and you get less of a sense of there being
anything visible along the edges. The gland is distorted, as postop glands tend
to be, but here I don't really see anything that looks suspicious for
tumor/hyperplasia leftover.

I hope that helps, I don't know at what
point in the retesting they are--let me know as things develop--
Best
regards and happy new year to you and the family,
Ian McCutcheon

PS
nice touch with making Justin's disc blue and Jessica's (near) pink, I liked
that!

Jess picked the colors for the CDs
Originally I'd hoped that he found clear cut tumors as that could make things so much easier. But now I'm thinking this might be the best thing as I'm hoping I can get Dr. F to see the wisdom (for our family) of having both kids go straight to BLA as I know that quite often after a second pit surgery, a BLA follows. The reason being, I'm afraid we could lose insurance if Bill's recovery (when he gets to surgery) takes longer than he anticipates. And I know there is no way to predict how long recovery will take. And even if recovery goes okay there is always the chance of Bill losing his job because the oilfield is going to pot at the moment. Either way, I'd like the kids to get to surgery ASAP, while I know we have insurance.
So it's time to email Dr. F and get his opinion.
Poor Bill has to go back to work in a few days. He doesn't seem to feel that bad (relatively speaking) when he doesn't have to work. I feel bad that he has too. It would be easier if his job wasn't so physically demanding.

Sunday, December 28, 2008

I just stumbled onto a great blog post. http://some-elsie.blogspot.com/
Here's an exert.

Some people have the terror of facing a terminal diagnosis,
while others have a reasonable chance of living a long time with/despite their
disease (not always a happy thought). Some people, such as myself, feel really
truly lousy on even the best of days. Until I got sick in this way, I never
understood how severely ill a person could be most or all of the time for years
on end. I understood loss of function, and even chronic pain, but the idea of
feeling sick all of the time (without being terminally ill) never seemed to hit
my radar screen.

The rest is also worth reading.
I've been hearing ads lately that say if your anti depressant isn't doing the job then maybe you need to take ?????? with it. I'm thinking that maybe if your anti depressant isn't doing the job you have an underlying problem that hasn't been found yet.
Won't get on my soapbox again as it is all just a few posts back.

Saturday, December 27, 2008

This time next week we will be into a new year. I think we'll be going in still waiting for answers. Waiting for results of IPSS and AVS for Bill. Waiting for Dr. McC to have time to read the kids 6 month MRIs. I don't know whether to hope he sees tumors or not. If he sees tumors, he might be willing to do a second pit surgery. If he doesn't see tumors maybe Dr. F would be willing to consider BLA for J&J. I keep playing with this idea as I think even if they have a second pit surgery they will still eventually end up with a BLA. But by the time that needs to happen there may be no insurance - oil field is not doing well at the moment and Bill is getting sicker. I think between those two there is good reason to think we could be without insurance at some point soon. I would like to have all three get to surgery before that happens. Which means the kids need surgery before Bill or real soon after. Guess it's not my decision, we'll see how it plays out.
Went to the farm and took Dad to lunch today. Although he doesn't say it, I think he's disappointed each day when he wakes up and finds he's still in this world. I think he feels he's ready to "go home."
It's cold again today but not as cold as most of the week has been. Yesterday was crazy, it felt like spring. When I got up around 4:30 to do papers it was 42 degrees! Unheard of in December. Probably the temp wouldn't bother me too much except it seems twice as cold early in the morning doing papers.

Thursday, December 25, 2008

Look at my computer screen. This has happened a few times. It seems like I hit something on the bottom left side of my keyboard right as it happens. If I click anywhere on the screen, it rights itself. I wonder what makes this happen. Looks pretty cool.
A couple of months ago I was talking with a gal from our church. We have off & on discussed Justin's and Jess' Cushing's symptoms. While we were talking she started mentioning some things going on with her daughter. They started soon after she'd hit her head during a game a few years ago. Their whole family is pretty small. While her daughter doesn't look like she has Cushing's she has gained a lot of weight the last year or so. She is probably around 14 or so and still has a very good figure, her weight gain was all proportional. Still, she is much bigger than her sisters. And quite a bit bigger than she was a couple of years ago. I actually remember noticing that she was getting bigger. I had quit thinking about it because it's now normal.
As we talked, it also came out that she has a lot of stretch marks. Her mood swings are terrible. And since she has four older sisters, her mother knows that her moods are different than a typical teenage girl. Jess said that could explain why sometimes it seems like this girl likes her and sometimes it seems like she hates her.
She also has a hard time sleeping. I think I also remember her mother saying that she is "sore" a lot. There is probably more that I can't remember right now.
I know that when she first started having problems they took her to several different doctors. She had a MRI and, drum roll please........., she has a pituitary tumor. She was referred to an endocrinologist recently.
I know her appointment was in Denver the same day that the kids had their MRIs. I hadn't had a chance to talk to her until last night after Christmas Eve services. It was sort of a frustrating conversation. While I don't think she disbelieves me (with my talk of her daughter having Cushing's) for the moment she's choosing to go with the doctors as her daughter's symptoms aren't bad at the moment. Her stretch marks are faded, she's been feeling better, etc. And of course the doctor ran some tests and everything came back fine. Including her cortisol. Of course it was done at noon and it was only one test. Obviously this endo doesn't understand Cushing's especially cyclic.
I won't bug her about this, in fact I won't bring it up with her, as she'd probably start to think I was a little off my rocker and I'd hate to alienate her. But I will be very surprised if her daughter doesn't have a dx of Cushing's at some point in the future.
It's just so frustrating that someone has once again run into a doctor that will be hampering their health.
But I remember it took me awhile after discovering Cushing's to get serious about getting a dx for Justin. And then Jess. And then Bill. I guess as long as you're not desperate, it's not time yet.
Merry Christmas.

It's been a good Christmas. It started off very good because Bill got up and did papers with Jess. Never woke me up. I heard him go out to start the van & figured he was planning on helping me with papers. But when I got up, the van was gone. So were Bill & Jess. It was so nice. It's been years since I have been home and not done papers. Unexpected presents are so nice.

This is so weird. We're watching a "House" marathon. I'm watching the second episode today that concerns Cushing's. Weird.

Justin had been in OK with his girlfriend and her grandparents. He'd said he would be home Christmas day. Last night he told us that they were leaving late last night and would get in early this morning. I know he quite often doesn't sleep at night, but I was a little worried about him driving all night. When he does get tired it seems he gets very tired. So of course by brain works overtime and starts to imagine what it would be like if he didn't make it home. So when he called early this morning to find out what time to come for breakfast, I realized that it was indeed a good Christmas. Even if he fell asleep and never made it over all day, it was good.

Still watching "House". So there are TV doctors that need strangling also!

We always have a big breakfast Christmas morning. Presents are after breakfast. Justin and Faith showed up right about the time we'd given up on them coming and were going to go open gifts without them.

I'm making a big confession here. We had a much bigger Christmas than I'd originally planned. My thinking might be a little screwed but....... I'm thinking there could be a good chance that there won't be the funds to have much of anything starting next year about the time Bill has surgery. So this was like a last hurrah. I don't know if it was right or wrong but at this point it doesn't matter.

Jess fell asleep watching TV. Bill is messing with his laptop. There is a ham in the oven, courtesy of Murfin's. They give all employees one every year.

Tuesday, December 23, 2008

Had to go to the lab for blood work. So I stopped at Medical Records and got the results of Bill's & Justin's midnights they did last week. Bill's was 9.8 and Justin's was 8.8.
I think Justin now has two high midnights and three high salivas. Definitely a recurrence.

Monday, December 22, 2008

For anyone who doesn't follow http://herdingzebras.blogspot.com/ this is something I posted recently.

I've heard it said many times and I've read it many times, depression can cause illness. HHMMMM? I would wonder. I have my own personal theory about that and love to tell anyone who will listen.
I have lived with Crohn's for many years. It took several years to get it under control (for the most part) and keep it that way. I still have the occasional flareup but these days they are usually short lived instead of days/weeks long.
One thing I have noticed over the years is how often I suffer from depression.
When I was with my original GI, I sometimes noticed the depression. But truthfully at that time it was somewhat hard to tell as I seemed to be sick most of the time or on massive doses of prednisone. Of course each time I was getting to the end of my wean off of prednisone I was starting to feel sick again. When you walk around daily feeling like you will throw up any minute, have stomach cramping to rival both childbirth labors I've been through, run a constant temp of over 100, while trying to raise young children, work full time and keep up with the house work and everything involved with keeping the family running, it would probably be a little hard to notice some depression mixed in there.
I do remember once telling my GI that I thought I noticed my mood changing a lot right before I would have a really bad attack. Really bad, meant having most of the above symptoms plus severe diarrhea and vomiting for about twenty four hours. I would then go back to the "normal" feeling bad. He told me it was my cycles. I didn't believe him.
I eventually dropped this GI and just went through my PCP. Mostly what kept me feeling semi decent through this time was that I only ate soup. Five months and all I ate was soup. A couple of bites of solid food could set off an attack. I finally had a NP refer me to a new GI.
I fell in love. I had my initial visit and I believe, went home with a prescription, although I can't remember for sure. I know I went to my second appointment with a long list of questions and more questions depending on what answers I got to the original questions. I never had to ask one of them. Dr. Johnson walked in, greeted me and sat down and started talking. He addressed every question I had without me having to ask. He had a plan! And if the plan didn't work he had some backup plans. Wow, I was so impressed. It took several visits to get my medication regulated. And for the most part I've been doing okay for the last few years. I have checkups every few months.
All this has been leading up to my bouts of depression. While Dr. J and I were working on getting my meds regulated to the correct dosage I would quite often have depression. It would take me awhile to recognize the symptoms. At first I always found something to blame the depression on. But I began to notice that after being depressed for a few weeks or so, I would then start to show symptoms of a Crohn's attack coming. Sometimes my dosage would have to be change. Sometimes I'd need antibiotics to clear it up. Bet e-v-e-r-y time my Crohn's symptoms were successfully treated, my depression would disappear. How cool was that?
I think of other people that I've known that seemed to be suffering from depression. Usually it has been someone who had always seemed so positive and then one day it was as if their personality changed and they found everything to be depressing. I believe all were later diagnosed with a medical condition. I don't remember what each one had.
I firmly believe that depression is probably the first outward sign of a very real medical problem. I think since it shows up before any physical symptoms that it is thought that the depression brought on the illness. I personally believe that is backwards.
If I had any idea how to go about it, I'd find some grant money (you know, just pull it out of thin air) and do a very comprehensive study. I believe it could change the lives of many who suffer from depression.
I have watched my family suffer off and on from depression while battling Cushing's Disease. I have watched the depression lift as if by a miracle after surgery to treat the Cushing's. I am now seeing it return as there is a recurrence of Cushing's.
Anyone have any thoughts they'd like to share about depression? I'd welcome them.

Sunday, December 21, 2008

Vote for MaryO http://www.wellsphere.com/maryo-profile/96746
She has done so much for the Cushie community. It's a chance to get Cushing's some exposure and MaryO the recognition she deserves. Everyone go vote for MaryO and let's change the nature of the Cushing's beast. Getting doctors to recognize this disease would make the journey soooo much easier.

I also found this today.
http://www.medgadget.com/archives/2008/12/the_2008_medical_weblog_awards_sponsored_by_epocrates.html

Welcome to the 2008 Medical Weblog Awards! This is
the fifth year of the competition. These awards are designed to showcase the
best blogs from the medical blogosphere, and to highlight the exciting and
useful role medical blogs play in medicine and in society.


I nominated Robin at http://survivethejourney.blogspot.com/. I think she has a wonderful blog and has caught the eye of the medical community. Maybe by being nominated (several times! all you Cushies check this out) and winning (hopefully) the word about Cushing's will spread. Even if she doesn't win I would think that having many nominations out there will catch the attention of some people and the word will still spread.
So everybody go nominate Robin. We must spread the word. Think how great it would be if Cushing's became recognized by many PCPs and endos out there. Maybe some year another generation won't have to fight so hard to get a diagnosis and treatment. How great would that be.
So, for all those who come behind us, please go vote for these two wonderful women..

Tuesday, December 16, 2008

I'm sad. My friend has stage III ovarian cancer. She starts chemo next week.
Lou was a customer at the store for many years, probably the best customer we had. We'd joke and ask her when she was just going to come work with us. At some point we asked her seriously if she would consider working part time as our "fill in." She agreed and has worked with us for several years.
She would fill in when we needed her. She told us at the beginning that her grandkids sports always took first place. We knew that because we'd always known how much watching her grandkids play meant to her. That's what most of her photos were.
A few months ago, I really can't remember when, she started feeling bad. So she went to her doctor. I can't remember exactly how it all went but there was a lot of testing.
She's pretty closed mouth about all of it. Tonight she sent out a mass email telling everyone what was going on.
For some reason I always suspected that they would find cancer. I'm sorry that I was not wrong.

Sunday, December 14, 2008

I came across a blog last night that I had to study this morning and see if I still felt the need to contact her. Today I decided I must contact her and just sent her a message. I'd left a comment on her blog but it seemed that she probably wasn't planning on being back to in very soon as she has a lot going on.
She has a 13 month old son who looks like he has Cushing's. She had mentioned that doctors had thought that at one time when his labs were coming back abnormal. But then they had him retested and labs were normal and he had stopped growing.
The blogger has an etsy sight and I figured out how to contact her (I hope anyway). I gave her contact info for me and for the Cushing's site. I hope she takes me seriously. The little boy reminds me so much of pictures I've seen Jackie's and Jo's (Cushing's board members) girls when they were babies.
I pray that they find answers.
I love my corn bag. A friend gave it to me many years ago. I've always just used it when I was sick. This morning after papers I heated it in the microwave and used it when I went back to bed before church. It's great. I think it will become my winter friend.
It was cold and windy doing papers. I think wind chill was -15. Bill helped this morning, he does that sometimes when he's home. Cold doesn't usually bother him too much but this morning he saw the wisdom of pulling in most driveways. During nice weather it's no big deal to stay on the street and walk up to the porch. In extreme cold weather Jess & I like to hit all the driveways we can. Of course it then just becomes habit on some houses.
I think temps tomorrow are supposed to be colder. Friday evening the weatherman said that Monday would be a day to stay at home. Wonder if my boss would buy that. Probably. as long as she can stay home to.
I forgot to mention in past posts, that when we got home from LA there is a very nice wreath hanging n the trellis by our rosebushes. Looks very nice. I'm betting my sister, Sue had something to do with that.

Saturday, December 13, 2008

I'm trying to make my body adjust back to Central time. I have a harder time adjusting when I come home. I suppose part of it is that I have a schedule that must be kept. When in LA, we have appointments but LA is two hours behind "our" time so it's never an issue of getting up on time.
Not too exciting of a day, except that I saw Dad. We hadn't been out to the farm to pick him up for lunch for about three weeks. That makes me feel bad as we are usually there every Saturday. His memory is failing some and I'm not sure he remembered that I hadn't picked him up for two weeks. He does always know it's Saturday if I/we show up. I think you easily loose track of the days when there is no schedule. He did ask how Bill's testing went so I know he remembered that we were gone.
I got the idea today that we need to have a 90th birthday party for him next May. I think he would enjoy it. I'll need to talk to my sisters and see what they say.
He used to write wonderful stories about his growing up years. I've started putting them in a blog.
http://dads-stories.blogspot.com/
I'm even adding some stories of my own (mine are red). I think it's important to pass down stories. I've also made notebooks for all of us with his stories.
Bill had a good idea for me. He thinks I need to get Dad to help record some family history. I think I could then include the "voice" stories on the blog. I'll have to see if Dad is interested.
He lacks energy and strength. I know he would be a happy man if he didn't wake up one day. I believe he is ready for his reward. While it's not hard to think about at this point I do dread the day it happens. I know from Mom's death that about the only thing that truly helps with the dark days after a death is remembering that Christians have a place reserved.
I just pray that Dad's reservation isn't for a while yet.

Friday, December 12, 2008

Bill & I got home last night. Now it's back to real life. Early mornings, cold weather, a house that still needs cleaned and work. We were pretty busy today, did no one know it's Friday. Friday is catch up day and a day that for some reason we seldom see customers unless they're coming in to pick up.
But then it didn't seem like Friday to me either. I've been off on days since we left for LA last Saturday. This may sound crazy but I was really thrown flying for medical reasons on a Saturday. I realized every time we've flown for medical appointments or surgery we left on a Tuesday and flew back on a weekend. So I guess in my mind that was the way this trip should of been.
Tomorrow Jess & I go take Dad to lunch again and that will put me back on schedule. It has been three weeks since I last saw him as we missed the last two weekends. It'll be good to see him again.
Jess is at Ashley's. Must be a Friday thing, she was there last week too. Bet they're playing Wii.
I hate Cushing's. I want a normal life again. I don't want to always think about the next step or rearrange scenarios in my mind about how we get all three healthy again. Or worry about whether they will ever be healthy. I remember another mother from the Cushing's board one time saying "it's always in the room." She was so right, it doesn't matter where that room is, home, work, hotel, church, Cushing's is there. I'm tired of trying to figure out what we do if Bill can't continue to work.
Sometimes I hate people who appear (key word there) to have normal lives. Actually I remember having a fairly normal life. Although looking back I know that Cushing's has never been a friend to our marriage.
I quite often wonder who died and left me in charge. Where is my mother when I need her.

Thursday, December 11, 2008

We've been back at the room for awhile. Bill is sleeping. I think having two procedures just two days apart was a little hard on him. He's pretty sore where they inserted the catheter into his thighs. Same place both days. Think he'll be glad to get home tomorrow.
Discharge orders say no lifting more than 10 lbs for a week. That rules out his working. Oil rig work is pretty physical. He called Bernie today, head guy at the Colby office and told him about not being able to work for another week. Bernie said he'd probably be off until after Christmas since the rig usually shuts down for a while then.
That's going to be tough. Lost pay can cost a lot with this disease. Murfin's has no sick days. By the time he goes back to work he'll be at least three weeks with no pay. Not a good situation. But I've accepted it and am okay with it. It can't be changed. Took about a half hour or so to get over being scared to death of what we'll do with no pay. But I do wonder how we pay our half of the insurance when there is no check to take it out of. Wonder if we write them a check. That'll hurt. It's about the size of my paycheck,
Leaving in the morning for home. Should get into Denver mid afternoon and then on to Colby. Back to work on Friday.

Tuesday, December 9, 2008

I think of Jess everytime I see this on a billboard. This particular one is at the bus stop.

We went to the Farmer's Market today. I find that place fascinating. We didn't stay long at all as I started feeling really sick. Came back to the room and I slept off and on for several hours. Feel a lot better now. Bill says I did the same thing in June. I don't remember that.


Got the call from Cedars today, Bill reports at 9:00 tomorrow.



When I was a kid, I thought staying in a hotel/motel was great. We probably only did it a couple of times while I was growing up. It's not quite as exciting now. Too many hotels rooms waiting for medical appointments.



Monday, December 8, 2008

I just saw that I've done100 posts. Imagine that!
It seems that Bill is just one year behind the kids in his Cushing's journey. It was late June of 07 that I took J&J to see Dr. Friedman http://www.goodhormonehealth.com/ in Los Angeles, halfway across the country. One year later I was taking Bill.
It was about one year ago that I brought J&J back out to LA for IPSS. Now here I am with Bill.
So when I come out here with Bill it all seems familiar. We stay at the same places because I know they work. Saturday, coming up in the elevator when we arrived, it stopped at our floor and I knew to wait about 10-15 seconds and it would drop about 1/2" and then the doors would open. Now, that isn't something that I even knew I remembered until it was happening. I found that amusing.
Of course the experience at UCLA was different. The department has moved to a new location. Looks like a new building. But then you wonder, how do you build a new place in the middle of LA? It's already pretty full! Regardless, the department moved.
But I'll tell you - the new department is really cool but they don't seem near as efficient as last year with the kids. Three different people went over the exact same questions with us this morning. I was beginning to think that they were trying to see if he'd change his answers! The anesthesiologist told us this morning, after she took BP and got 205/121 that the procedure might not happen. She didn't even bother me because I knew that we weren't leaving without it. I told her to check his chart, that we'd sent a letter from the cardiologist clearing him for this procedure. So she had to go find it. Then came up with the plan for sedation.
Nobody seemed to know what procedure he was having, although I presume Dr. D would know when he got in the room! Then each had to tell him what he should be doing for his high BP. Been there, done that, doesn't work, let's get on with the business at hand.
Last year, if I remember right, everyone talked to us at once (so we only gave the info once) and seemed to know what Cushing's was. Seems it's a different system now. I thought it seemed like a waste of time for three people to go over the exact same questions.
So, it has been somewhat different this year.
It seems really odd to be in warm weather and listen to Christmas music. Yesterday I heard "Walking in a Winter Wonderland." Not a a chance of that here. Christmas lights in warm weather and on palm trees are also a bit different.
Seems the LA Times is filing for bankruptcy.
One test down one to go.
Just got back from getting Bill at the hospital. Man is he impatient. I already knew that but it's a little worse when he is waiting to be released. Never been to the hospital with him before.
I told him that if he got to surgery, I wasn't staying with him. I'd come visit some but I'm not listening to him all day, talk about how he's ready to leave. Wonder if he knows that I really mean that.
He stopped by Ralph's to get what he wanted for supper, I came on back to the room.
Yesterday we rode the bus to Venice Beach and walked around for awhile. We ended up walking to Santa Monica Pier. It was really nice. Cool things to take photos of. People everywhere. Some kinda strange. I always wonder about that, have they always been like that. Are they homeless, some look it, they need to bathe. Not to get to deep here, but a couple of years ago I figured out exactly how homelessness happens. It wasn't a real long thought process either. Look at a person with Cushing's, when the depression, apathy, pain, etc. gets so bad, what's left? What if one can't work because of all this and there is no one else to help. I try to stifle those thoughts most days. But I understand how it happens. No one has that for their life goal. Bill had taken a photo of a group of guys from Italy. They offered to take one of us too. We have very few of us together. Yes, this is what Bill looks like. He used to keep his hair and beard trimmed up. I bet it's been a year since he's done that. Wonder why after all these years he's let it grow. Not that I mind, I just wonder. Seems he's gotten a lot grayer in the last year also.
Bill said this was some of the best clam chowder he's ever had. Said the bread bowl was good too. We ate at Santa Monica Pier.

I presume this is a lifegaurd chair? Not really sure as it's a ways away from the water. But it's pretty cool.



Found this neat window in a little nook of shops at Venice Beach. I have some sort of fascination with taking photos of windows and doors.


Pretty little balcony off an apartment along Santa Monica Pier. If it was mine, I'm not sure how much I would use it. So many people passing right above me.

I don't know if this is what you do with boarded up windows or if there are even windows there. But It's a good look.





Sunday, December 7, 2008

I wrote a long post last night and the internet quit just as I was posting! I quite often copy into wordpad first for that very reason, but....... So I'll make another attempt.
We got to LA late yesterday afternoon. I think we checked in right at 5 p.m. PST.
We left home around 7 a.m.. It's only a little over three hours to DIA but I hate to take any chances when we're flying. I like to arrive way before we need to be there. I found THE coldest bathroom I have ever been in, on the way to Denver. We stopped at McDonald's in Burlington. It was seriously colder in the bathroom than it was outside. Guess they don't worry about employees taking too long! But I really hate cold toilet seats.
As it turned out, once we parked the car, caught the shuttle, restrooms, stop at the bookstore, security, food & drink, etc., we got to the gate about an hour before our flight. Which was okay, I brought a lot of books with me, expect to be doing a lot of waiting. Bill had picked up books at the airport.
Jess tells me I always go to sleep before takeoff. I think she's right except this time I vaguely remember starting to lift off but that's all. We had a short layover and I stayed awake during the next flight. Finished a book.
We went to Ralph's and stocked up on groceries last night. Probably don't need a whole lot. Mostly sandwich makings. The free bag Bill got at Hudson Books in the airport (because he bought three books, one for me) came in very handy. Much easier to carry a bag over your shoulder than turn your fingers numb. We're just two or three blocks from the store. Bill intends to get a good meal today at the Farmer's Market. We're going there because a guy he works with wants him to get him some certain raspberry jam (preserves?). I think we may have to ship it home, I'm guessing that we can't take glass jars in our carry on luggage. And I don't want to check bags.
Bill's showering and I think we might figure out some place to go. I didn't think he'd want to go anywhere. Guess I was wrong. Better remember my camera.
Called Jess last night. Sounds like she had a good day. She's staying with Ardath. Jason & Erin, our new youth pastor and his wife took her to supper last night. They'd also picked her up for practice for the Christmas program. She'll spend most of today with them. They were picking her up for Sunday school and then she'll just stay with them until after the Christmas program tonight. There is also a practice this afternoon. She'll get to know them better. They seem so nice. Have three cute kids also.
Jess sent me an email yesterday. We'd gotten a thank you from Katie for our gift at her bridal shower. Jess typed out her card so I could read it. Had to laugh when I read this part
I will always have fond memories of our days at Colby Photo together - even when
I hear certain songs will make me think of you both. Thank you for your
wonderful friendship. You are truly a blessing to me in my life. May God bless
you always. See you soon!! Love, Katie

Jess and I have certain songs that always remind us of different people that worked with me. So it was funny to hear Katie say this. I'll have to ask her which songs and see if they match ours. Jess and I have different songs I think that remind us of her.
Bill's about ready to go, so I'll post more later.

Friday, December 5, 2008

We leave for LA early tomorrow morning. Pretty much have everything done except some laundry and then need to pack. But that shouldn't take long.
Today is Ashley's and Alisha's birthday. Jess is at supper with Ashley and her folks. Alisha is cheering tonight, not sure if it's b-ball or wrestling.
There was a time that I couldn't stand the thought of leaving the house in a mess when I was going to be gone for a few days. I wanted everything straightened up and the dishes and laundry all done. Now? I don't care so much. I've lowered my standards for just about everything!! If we get where we need to go and have clean clothes with us, I consider it good.
I got the results of four out of five salivas we sent in for Justin. Two were high. I guess that's good since I've been pretty sure that his Cushing's is back. I can no longer take my short trips into dream land and hope that things are okay. So, now I know for sure that J&J both have a recurrence.
So maybe Dr. McC will find a tumor on each of their MRI's, which should then clear them (well, Justin probably needs a few more highs, he has one high midnight and two salivas) for surgery (again). Then maybe Bill's tests next week will show what is definitely going on and he'll also get a dx. Then we can just schedule them all for surgery together. Built in surgery buddies. That would make it all too easy though!
Next post from LA. At least it will be warmer there.

Thursday, December 4, 2008

I've been a bundle of nerves for two months trying to get to this point - IPSS & AVS for Bill. Now that the time is almost here I just want it to be over with and back home. I really like home these days, wish I never had to leave it.LOL
Learning something new at work. I'm going to start doing the framing and matting. Our framer quit last week. Ronda, who previously worked with us for about ten years as the framer is teaching me. She's pretty good at teaching. Not sure how good a student I am. No, actually today was pretty good. We'll see how it all works out in the long run. I think it might actually be fun when I get the hang of it.
It's been really cold the last couple of days. A little bit of snow today.
16. clean Plaza Friday eve <
17. refill my meds <
18. cat supplies <
19. dishes for store <
20. call lab for Justin's midnight <
21. print boarding passes <
22. return call to UCLA <
23. ??????????

Wednesday, December 3, 2008

Leaving for LA in a couple of days
1. signed medical release for Ardath and the Purdy's <
2. food & snacks to store <
3. update paper route list for Virginia <
4. call John & give him Virginia's # <
5. letter to paper customers <
6. call Esoterix for J's saliva results <
7. pick up pay check <
8. maintenance on machines
9. call Pat about contract and set up PM visit <
10. phone numbers for Ardath & Purdy's<
11. books to read, recheck books <
12. confirm hotel reservation
13. laundry <
14. order Unique <
15. anything else?
Not all that much, just need to make sure I get it all done.
Wonder if there's any need to take Bill's medical charts<

Monday, December 1, 2008

Had a somewhat odd thing happen today. When I got to work there was an envelope with my name on it in the film dropbox. It was only a few dollars short of what our renters owe monthly. I just figured they were a little short at the moment. I did think it was strange that they were paying in cash as always before they have used a check. I didn't think that much about it except to think that I'd have to get them a receipt.
Imagine my surprise when our renter knocked on the door tonight and handed me the rent check for December.
I've wracked my brain trying to decide who gave us this wonderful gift but obviously they don't want us to know. I then think back to a couple of months ago when I thought that my city and gas bills looked different. Different as in, they were pretty low. I called the gas company to ask about it and was told that an anonymous person had made a payment for us. So when the city bill came and it was smaller than usual, I was smart enough to examine it closely and see that a payment had been made there also.
It's harder to find payments made on the gas bill. But even if I had noticed it, I still would of called because I knew I hadn't made a payment. Ours is done with auto debit. I do that with most of my bills now because these past few years I've almost been forgetting to pay the bills on time. I hate late payments, but I just couldn't seem to get it done on time.
I'm very grateful for this anonymous benefactor but it makes me feel humble. I can think of so many people who would do this - church members, family members, my boss, etc... I wish I could thank them.
Then I think about it some more and know that I must pass some of it on. There are many much worse off than we. It's nice to have enough to share some with others. It's nice to know there are good people out there. It's nice to know someone cares about our finances during our medical marathon.
For some reason this makes me think of trying to pay Dad back if you owed him money for some reason. Say he'd picked something up for you or whatever. Anyway, I learned that the only way to pay him back was to put the money directly into his account. If you gave him a check he'd take it and never cash it. If you tried to give him cash he'd wave it away.
I want to be more like Dad. He gives money to anyone he thinks needs it. He's given his car to people who needed one. He always says he doesn't need much. He's a great man.

Sunday, November 30, 2008


Well, it seems we must really be going to LA. I booked the hotel tonight. Although I feel just a bit odd about it. I usually try to call the hotel direct to make reservations. But during the phone call I found out that even with a UCLA Med rate it was more than booking online. Seems a little crazy to me. But I went through the internet.
We're staying at the Royal Palace Westwood.
http://www.royalpalacewestwood.com/
The kids and I stayed there last year when they had their IPSS. It's close to UCLA.
So now I have to get things in order at work so that I can be gone for most of a week. And keep praying that the test show exactly what is wrong with Bill.
I spent a lolt of time this weekend working on the stories that Dad wrote and putting them in the blog.
http://dads-stories.blogspot.com/
Mostly I'm doing it for myself but maybe the family will read it. I've put the address in my email signature. I have made notebooks of his stories for the whole family about ten years ago or so. But I thought a blog with all his stories that include so much history would be fun.

Friday, November 28, 2008

I got brave tonight and booked our flight to LA. I keep thinking I'll get a call and one of the appointments will be changed. Now to call for hotel reservations. UCLA and Cedars aren't very close so I decided I'll just try and book where the kids and I stayed last year. It's only a couple of blocks from UCLA and close to a bus stop and Ralph's.
My biggest problem is going to be figuring out how to drop off Bill's UFC. Last year Justin and I had quite an adventure trying to drop theirs off. I shouldn't of listened to him when he insisted he knew where we were getting off the bus. Oh well, we had a really nice (looong) walk through a very upscale residential area.
Bill's rig moves tomorrow. It happened the same way last time, moved the day after they finished up a location. I don't like when it happens like that. He doesn't have time to rest up. Even though he gets tonight off he has to work two shifts tomorrow, so he really doesn't gain anything. At least he will be closer to home now. Guess I need start cooking again. Jess & I quite often just ate what we could find.
Have a bridal shower tomorrow. Haven't been to one of those in a long time. It's themed around the clock. We (Jess & I) were assigned 1:00. We get to pick whether it's a.m. or p.m. and then buy a gift appropriate for that time. A clock or nightgown seemed too obvious. We finally settled on one of those Rubbermaid storage sets. Putting away leftovers from lunch.
Jess was feeling really sick last night about bedtime. I felt so bad for her. This morning I could tell she'd been up in the night. Maybe took a shower.
I used to sit in a hot shower when my Crohn's was acting up. Something about the hot water beating on me was so soothing. I taught that to Justin also. Wonder if that was why Jess took a shower.
I didn't get her up to help with papers this morning. It was snowing just a little while I was out. Doesn't look like it will amount to much.
Bill should be home today.New locations for the rig are going to be much closer to home now so he won't be staying in Hays. It's been around two months since he started staying in Hays. I think he's only been home about once a week or less during that time.

Thursday, November 27, 2008

On the fingers is how to eat black olives according
to the little girls. Jordan & Isabella aren't quite
sure about that!

Had a good time at my sister's today for Thanksgiving. Jess & I went out by ourselves. Justin stayed home and slept. Bill never came home from Hays, he has to work tonight and coming home would of meant he lost out on a lot of sleep.

Dad and all of my siblings except Sue were there. She went to SD to see her daughter who is pregnant.

No football after our meal, just a lot of talking. The little kids went outside and played. They spent a lot of time rolling down the hill at the edge of Elsie's lawn. What crazy kids! They had fun. I got out Jess' video camera and filmed some of it. They'll love that later in life.

Jeremy, Bob's stepson, was there. We sometimes only see him at Thanksgiving. It depends on his work and school schedule. I don't think I'd seen him since last year. The big advantage this year to him coming (besides enjoying his company) was he could go down to Dad's and figure out why his black box to convert his TV wasn't working. Justin hooked it up a month or two ago. The next time we were out the TV wasn't working right, could only get one channel I think.

We knew Jeremy had hooked up his mom's, so Jess suggested that he could look at Dad's. He said it was an easy fix. The TV needed to be on channel 3 for the box to work. I know that it has to be set there for DVD players and such but hadn't thought of that yet. We might have to write a few simple instructions for Dad since it now takes two remotes to control the TV. But at least we know how to fix the problem if he gets it messed up again.

Bill gave me a real scare tonight. I always call him at about 9 p.m. when he's staying out of town. He sets the alarm on his phone but has a hard time waking up, so I call until he answers. I alternate between his cell and the room phone. Usually I only have to call a few times. Tonight I called off and on for 45 minutes. I was really getting worried. I'd talked to his sister a time or two to see if she had talked with him but she hadn't, So she tried calling too. Finally she said we needed the motel personnel to go check on him. I think he woke up when they knocked on the door and then answered my call just seconds later. He'll be a bit late for work, but thank goodness he is okay.

He said he actually got some decent sleep today.

Wednesday, November 26, 2008

I DID IT! I DID IT! I DID IT!
Bill's IPSS & AVS are finally set up. Monday, Dec. 8 for IPSS and Wednesday, Dec. 10 for AVS. I've been working towards this for almost two months and finally it's set up. I'm almost afraid to get airline tickets and hotel reservations, what if they want to change the date. I don't really think that will happen but nothing has been easy about setting up these two appointments.
Setting up IPSS at UCLA really is easy. Setting up AVS at Cedars is much harder, they want to set up with "the office." That really isn't Lynne's strong point & I don't think they set up too many of these procedures.
But I've learned how to suck up pretty good through this whole process and tonight I got the gal at Cedars to let me set up a date. The whole time she's telling me that this isn't the normal way to do it and she really does need to talk to the office also. I just kept very nicely talking about how we were coming from out of state, needing to coordinate two procedures, can't take too much time off work, etc., etc., and it would be so helpful if I could just have a date............ I got one. That's all I really cared about.
I hated being a pain but, you do what you gotta do.
Today it occurred to me that I've been so focused with getting these set up that I haven't even started to worry about the outcome of the tests!! That's not like me at all - I always worry about tests, afraid they won't show the evidence that we need for a dx.
And then of course we fly out of Denver in December. So I'm sure I can start worrying about the weather also!
Just so glad to have a date. Bill can now tell his boss. I think it was frustrating to him because his boss kept asking him what the dates were. Finally, he can give him an answer.
I've just been tagged by Jess. I'm supposed to tell eight random things about myself and tag eight other bloggers. Play along.
1. We didn't have TV when I was growing up. Dad thought it was a waste of time. He's probably right! A few times in high school we needed to watch a certain TV show. If I didn't want to do it I'd just tell the teacher we didn't have TV. But if the show sounded good, I could go down the road to Wegman's and watch it with them.
2. I like just about anything to do with photography but have decided I'd never again want to do it professionally. Too many personalities to deal with.
3. I like quilting although I seem to have a problem actually getting one completed. And adding to my stash is really fun. And I love quilting magazines.
4. I have five siblings. Three sisters, a brother, me, my younger brother. It's weird, once we hit a certain age, it's as if the boys got elevated status - I'm the only sister with an older brother but now both my brothers seem to fall into the *older* category, which makes me the youngest. Follow that? But I'm a pretty good little sister, I do whatever I'm told to do! Really they're not bossy.
5. On my wedding day, my maid of honor (who is an only child) and I were the first to show up at our church, where we were all getting dressed. So Tammy and I sat on the car and talked. She asked what we were waiting for. I told her "Sue" (sister), she asked me why, didn't I have all my stuff with me or was Sue bringing some of it. I think I looked at her a little dumbly (is that a word?), she obviously didn't understand that there was no way I could get ready for my wedding without Sue (or any of my sisters) there! She always took charge and knew just what to do! We did start carrying our things in and thankfully Sue showed up in time that I didn't have to find out if I could get ready for my wedding without her! Told you I was a good little sister.
6. I have two children that have Cushing's Disease. Both had surgery in May to remove a tumor from their pituitary. Both have a recurrence, which we knew was a possibility. My husband is also testing for Cushing's and I'm fairly confident that he will also get dx'd. Supposedly it's rare, but I see a lot of people that I think look like they probably also have this rare disease. Not a fun time.
7, I used to work on a harvest crew, with my brothers. They do custom silage cutting, a lot of it in the South. I met my husband on their crew. It was fun for a few years, but after we married and had Justin, it didn't work much longer. It was fun while it lasted and I saw a lot of country. Some places we *lived* for several weeks at a time.
8. My daughter, Jess, & I go out to his farm and pick up my dad for lunch every Saturday. From his farm there are three towns that are each about 20 miles away. So we go to different places each week. Quite often three of my little nieces go with us. I enjoy this time with Dad even though we don't always visit a lot, he's very hard of hearing.

Now, let's see who I can tag.
http://stitchinbythelake.blogspot.com/
http://janetsmart.blogspot.com/
http://themiddleof11.blogspot.com/
http://cushiemama.blogspot.com/
http://femailhealthnews.blogspot.com/
http://mygardenhat.blogspot.com/
http://crazyforprimitivequiltsandgardens.blogspot.com/
http://happyinquilting.blogspot.com/

Happy Thanksgiving and happy tagging!

Tuesday, November 25, 2008

I think I'm finally getting somewhere with setting up IPSS & AVS. I do have a date set for IPSS. But then the big question is will Cedars set up AVS in the same time frame. Cedars won't let me set up the date myself, that must come from the doctors office. So I have emailed Lynne tonight to tell her the date. The email today said she was contacting Cedars tomorrow. But I'm not sure she's calling, I think she's just faxing charts.
I so hope this works out, it's almost nerve wracking trying to coordinate the two since Cedars won't let me set the date with them.
I'm sure putting the date in writing will jinx it. So I 'll just let that go for now. When I have two dates for two procedures, then I might feel like it's really going to happen.
I think Bill has the idea that I'm just not trying hard enough to get this done.
We'll see what I hear tomorrow.

Monday, November 24, 2008


After last years (2007) shop hop I quickly finished the block purchased from each participating store. I probably had the top completed in a couple of weeks or less. I hung it over the curtain rod, sure that looking at it all the time would inspire me to get it quilted and in use before Christmas.

Well, that was over a year ago and it still hangs on the curtain rod. I have no plans to have it finished by this Christmas but I could always surprise myself! I do entertain myself quite often by thinking about how I will quilt it and how I will use it. Will it be a large wall hanging or will I put it to better use by using it to cuddle on the couch. Who knows. Maybe it will change year to year. Of course, it needs quilted first before it can be of any use to anyone.

I really like piecing quilts and have no idea yet if I enjoy quilting them - as I haven't finished one yet! I have about five completed tops. I didn't actually count, just guessing. And a few more that I have the strips done and just need to put together. I think with some of them I may try the "quilt as you go" process and see how it comes out.

Sunday, November 23, 2008

Someone on the Cushing's board http://cushings.invisionzone.com/index.php?act=idx
posted this the other day. I finally came up with mine.
I keep seeing this commercial on TV. Don't even know what it's for, but
each person clicks their heels together three times, closes their eyes and makes
a wish!Let's try it!!

Thanksgiving is coming up and I've been doing some baking and house cleaning. I'm having my whole family over. I'm excited that Justin & Jess will both be coming home from college to spend time with us. This is a day I was never sure we would see. Getting them through high school was somewhat of a struggle, especially Justin, as they both had Cushing's through much of their high school years.
So having them in college makes us very happy. The fact that they've been in remission for a few years makes me even happier. It's so good to see them healthy and happy again.
While they're home we'll talk about plans for Christmas.
If either of them has time on their Christmas break they can travel some with me. After I won that large lottery about a year ago, I've spent time traveling to and with Cushing's patients. Many need an advocate with them. I figure I've done that for a few years with my family and now I can afford to do it for others. The best part is that I can pay for their airline tickets to get to a good specialist. If they can't afford the appointments, I'll pay for that too. It feels so good to help someone get help.

Hey, it's a wish, so it can be whatever I want. And this is what I truly want.

Friday, November 21, 2008


Jess is on her way to Denver with her youth group. This girl needs to learn to stay home!!! They are going to a Toby Mac concert. Relient K will also be there. She likes them both. There is one Relient K song that I really like "Sadie Hawkins Dance." It's cute.
They'll stay overnight at a church in Denver. Tomorrow they are fixing and serving dinner at a Ronald McDonald house before they come home. I'm sure they'll have a good time.
Yesterday I got all the results from Bill's physical and labs that he had done on Tuesday. Unfortunately they didn't include anything about his chest x-ray. When I called the office they said they would try to have it done today and fax to me. Did I get it? Nope. Did I call? Yep. Will I get it? Maybe Monday. We'll see. I really, really want to get the procedure dates set up.
I had the day off today. It'll be my last weekday off for a long time unless I'm gone for medical reasons. The other gal that worked with me part time quit. Next Wednesday will be her last day. Without doing as much film, I'll be able to handle it pretty much by myself. I do get to learn how to do framing though. That could be fun.
Justin is doing another midnight tonight and a saliva. Then one more saliva tomorrow and I can send them in. Hope we get the jackpot with some of them. I saw his boss for a few minutes today. She said she'd noticed he wasn't acting like he felt very good.
I ordered Bill's Christmas present today. I'm so proud of myself for picking it out all by myself. I'd say what it is but there is always the slight chance he has stumbled across my blog and I hate to ruin surprises.

Thursday, November 20, 2008

I was wrong in my last post - J&J both got a break. They had positive pathology for ACTH secreting tumor after they had their surgery last spring. Although with Dr. F it might not be quite as critical as he knows that not everyone who has Cushing's gets a positive report.
I've read reports from a couple of people that say the MDA endos wrote letters to their local endos saying they'd never had Cushing's and needed no further pituitary testing or followup. Oh, reallly?
One, I know, said she did not have positive pathology. Just my opinion, but I think it's just sour grapes on the part of the MDA endos as they no longer see Cushing's patients prior to surgery if they came from an outside referral. It's really too bad they have this attitude as MDA is really a great facility and has a great neurosurgeon. The endos just have very strict standards for what is and isn't Cushing's. High UFCs are really important to them. Now, I'm guessing that a positive path report is also very important.
This is all just my opinion, I have no way of truly knowing what is going on.

Wednesday, November 19, 2008

You would think that with three people with Cushing's/possible Cushing's (one is not dx'd yet) that at least one of them could catch a break. Nope, not yet.
Two diagnosed, two surgeries, two recurrences. Now two new MRIs show no tumor. Off to Dr. McC they go. I pray he finds something.
Jess has enough diagnostic highs for surgery, but only if the tumor shows. Otherwise try keto for awhile and try a new MRI at a later date.
Only one diagnostic high for Justin. Need him to get some more midnights. And he's working on a set of six salivas. Hope some come back high.
If this was for me, I'd take a break about now. I'd even quit thinking about it.
Today may be a decent day. For the first time in a long time, when I got up to do papers, I didn't feel as much dread for the day as I usually do. The feeling usually only lasts for awhile. It's not as if the whole day is bad. But I can only feel that a better start might equal a better day. I hardly felt like throwing up, my breathing was easy, didn't feel like I was hyperventilating, It would be nice to feel like this every morning.
Bill got his physical yesterday. Hope to have the results by early next week and can once again start to set up IPSS & AVS.
I called yesterday to get the report on the kids MRIs. When requesting a report you can only leave a message. When I got home there was a message to call them. I've wondered lately why, when you fill out all the info for a doctor's office, do they ask for alternate or cell numbers. They seldom use them. Think we need to just put my cell number for the house phone, then I could always be reached. I'll call here in an hour or so and see what they wanted.
We had some saliva kits laying around the house. I've been taking one out to Justin at work every night. Should have them all done soon and will send them in. Need to print some more midnight orders and have him go back to the lab several nights.
Nic just called to wish me happy birthday. That was so nice of her. I wish her surgery date was set. I so want her to get better.

Monday, November 17, 2008


Justin & I went to Denver yesterday to pick up Jess. We timed it pretty good and got there about the same time. It sounds like she had a good time even though it was a fast trip. She took a lot of pictures that I want to take a look at.
I had her picked up by about 10:00 (?) and we couldn't check into our hotel until around 3:00. So we drove around to see if we could find anything that struck our interest. Finally went to Target. Jess and I did some of our Christmas shopping. I like to spread it out if possible.
Justin slept most of the way to Denver, slept while I was in the airport getting Jess. I locked the car doors with him sleeping in there, I figured anybody could take anything they wanted and he'd never wake up! He also slept through our shopping in Target. He did wake up for a late lunch and then fell back asleep after we checked in to the hotel.
We did go find ImageOne last night so we'd know where we were going this morning. We ate supper and went back to the hotel.
Getting MRIs was a long process this morning. Jess was getting the first one and after she'd been in there awhile, the tech (?) came to the waiting room to talk to me. She wanted me to know that they couldn't get Jess injected with dye, couldn't get a vein. I felt a bit silly as I immediately started crying. But in my defense I will say this is the first public meltdown I've had, which probably isn't too bad considering we're right at three years now.
Anyway, she wants to know what I want to do. Me? how would I know. I went out to the waiting room in tears and told Justin what was wrong and then went outside to cry for awhile. When I came back in, Jess was in the waiting room. They came and got Justin and I worried about whether they could find a vein in him. I'd never thought about it before which is probably partly why I got so upset when they couldn't find a vein in Jess. If you're prepared for something, sometimes it's not quite as bad.
Jess said that they had even had a nurse come over from the surgical center (we were in a medical complex) to see if they could find a vein. I figured we'd just pray something showed up without contrast and schedule another one if we had too.
The tech came out shortly and called me into the hallway again. I was really afraid that she'd tell me there was trouble with Justin's veins also. But she wanted to know if it would be okay to send Jess over to the surgical center across the hall and "heat her up" and see if they could get an IV in. Sounded good to me. I think since we were from three hours away, they really wanted to be able to complete this. It took them quite awhile but she came back in with an IV inserted between her thumb and index. Yikes! I was so thankful they went to the trouble to find a way to complete the test.
I think Justin said it was only three tries to get his contrast in.
So we came home with the MRIs on CDs and should be able to get the report by tomorrow or the next day.
When we got home we swung by the hospital to pick up the results of Justin's second midnight. It was 15.9. Bingo. I was right, it's back. Now if both kids can just have a tumor show. I'm emailing Dr. McC tonight about sending these CDs to him. If tumors don't show, I need him to review them. If tumors do show, he'll need to review them as I'd like him to do their second surgeries.
It seems like it's been a long few days.

Saturday, November 15, 2008

Lunch with Dad was interesting. First Jess wasn't there. I was late leaving town and Bob called before I was out of town. Said he was at an auction in Hoxie and why didn't I bring Dad and the girls (his are the ones that usually go to lunch with us) there and we'd eat together. Oh, and tell Dad we bought the building so he won't wonder when someone asks him about it! Sure thing, Bob.
Turned out to be one of our more interesting lunches. The girls didn't know what an auction was, so I tried to explain. Even after being there, I still doubt they understand. First, there was no seating for the concession stand, but that was okay. Not too unusual when the auction is in a fairly small (since the crowd was large) building and it was cool enough the booth had to be set up inside. Bob secured an old chair for Dad as he wouldn't be able to stand that long. Hot dogs and hamburgers, girls, that's the menu, that's your choices. Chips and pop come with it.
Now picture three girls, nine, seven and four with food, drink and no place to sit! Two girls' hot dogs were kept on my plate. Interesting to say the least but not bad. We only spilled one can of pop & half of Grandpa's coffee. Which left three girls to share two cans.
While it would of been more comfortable to go to the local restaurant to eat, no one ever stops to talk to Dad. I don't know why, they'll say "hi" as they go by. But at the auction several people stopped and visited a few minutes. I think maybe when we're in a restaurant, people think they would be intruding. They wouldn't, Dad would love to visit with them.
After we got back to the farm, I stopped and saw Elsie, she just lives a half mile from Dad. Which is great for Dad as she keeps up with him very well. I really enjoyed our visit.


I stopped and took a few pictures of the old trees in one of the pastures on the way home. It's sad, most of the trees are dead around the farm. Most were cottonwoods and elms. We lived by a river and the trees never had to put down tap roots. But the river dried up about forty years ago and the trees slowly started dying. Makes me sad, I used to have so much fun playing in those trees. Since the river wound its way through the pastures, we had a whole lot of trees to play in.

I'm thinking (at least for the moment) that things are starting to look up. For some reason I'm organizing my Christmas music and listening to it. The best part - it's giving me that warm feeling I always used to get from Christmas music. Haven't felt that for a few years. I think last year I never even played any, and Christmas carols are about my favorite music.

I've had a strange thing happen a few times in the last many months. The first time it happened was when the kids and I were on our way home from Houston after their surgery. We were staying at Susan's house. The kids and I all ended up sleeping in the media room on sofas and chairs. Not that Susan didn't provide us each with a lovely bedroom, but we layed down to watch TV and just never got up. I joked that maybe we'd gotten to used to sleeping in the same room after staying in hotels so often!
Anyway, it really wasn't cold and I had a very heavy blanket over me. I should of been warm but instead I was freezing and never warmed up all night. I just thought it was a fluke but lately it has happened a few more times. I get so cold it honestly feels like there is ice in my veins. Sort of the reverse of a hot flash!
I know about being freezing when starting to get a Crohn's attack, This is different. While blankets make my skin warm, inside I can't warm up. I have no idea what causes it.
Strange.

Friday, November 14, 2008



Well, the good news is that both Cedars and UCLA Med Center said the letter from the cardiologist will be good enough to get Bill to IPSS & AVS. YEA!!! Of course now he needs to get another physical, etc. Hope he has time soon to do that.
I got the results of Justin's first midnight. It was 6.6. Not quite a 7.5 diagnostic number, but high enough to know that his Cushing's is back. It would be so nice if a tumor would show on both kids MRIs on Monday.
Yesterday after work Bill & I took Jess out to DIA to go to New York for the weekend, gee, what a traveler she's getting to be. Originally Bill wasn't going because he'd probably have to work. But yesterday he found out that the rig doesn't move until Saturday morning, so he was able to go with us.
Hopefully she's actually in the air by now. Takeoff was supposed to be at about 10:30 MST. We left her at security and she was fine with that. The Girl Scouts coming from the west coast were changing planes in Denver and she would meet up with them. She was to call before boarding the plane. I think she called at least three times to say that the flight had been delayed. She said the other girls flying in from other areas also had delayed flights. So the poor sponsor is already at the airport in Newark waiting for girls that probably have just taken off! I think if everything would of been on time they would already be there. I'm sure they'll have a good weekend once they get there.
I think most of the weekend is to be work on videos for the website. But there is some time late Saturday for some sightseeing.
I got a new phone. I needed to replace the battery in my old phone & was at a point where I was eligible for an upgrade. With the rebate I'd get on a new phone, I would pay the same as for a new battery. So, I'm now the proud owner of a new pink phone that has features I have no idea how to use! Jess will have to teach me.

Tuesday, November 11, 2008

We maybe got some good news yesterday. The cardiologist cleared Bill for IPSS & AVS. Thanks to everyone for praying for that. I called Cedars & UCLA and asked if I could fax the letter from the cardiologist to them and make sure it was what they were needing. No reason for Bill to get another physical and blood work if we were to find out they wouldn't accept it.
I was in a bit of a panic yesterday thinking that if labs expired after a month so would the stress test. The gal I talked with at Cedars said they were good for several months. So that was good news as I was afraid we'd have to get this all scheduled and out to LA before Thanksgiving. That was going to be pretty tricky.
I think I will call both hospitals today and make sure the letter is acceptable.
So, we will see. My anxiety level has decreased just a little.

Sunday, November 9, 2008

I had a phone appointment with our endocronologist is Los Angeles tonight. Some was good, some wasn't.
Jess-labs definitely looks like a recurrence, need to get an MRI to see if a tumor shows, if it does he will approve her for a 2nd pituitary surgery.
Justin-has a few signs of having a recurrence also. Dr. said to start testing. Please pray that he will actively test and be able to get high cortisol results (although he really has no control over the outcome of testing, he cycles, so it's pretty much a gamble each time you test).
Bill-this is the tough one. So much hinges on him. He carries the insurance and he's almost to the point of not being able to work. Actually, I'm not sure how he's still working. Thers will be no procedures set up until his blood pressure can be brought down. With four bp meds he's only able to get it down to about 180/120. He'll work with local doctors to try various combinations to see if it can be brought down. Although in the past it has never helped much. We're in a tough spot because I don't make enough to pay for our insurance should Bill not be able to continue working. While I want him to get a dx and on to surgery soon, it's pretty important that the kids get to surgery soon (hopefully before Bill) because I'm afraid there is a good chance that after Bill has surgery he may not be able to work for quite some time, and we'll loose insurance. That would then be the end of any testing, surgery, etc.I know to see my family, they really don't look sick. But that is definitely not the case. This disease affects every system of the body, physically and mentally. It slowly eats away at a patient.
A week from tomorrow the kids are having new MRIs done. Please pray that a tumor shows. It'll help their case immensely.

I'm hoping I get a few answers tonight with my phone appointment but at the same time I really don't know if I will. I think I'm kind of nervous about it. Most mornings I wake up and feel like I'm hyperventillating and going to vomit. That usually lasts through about half of the paper route and then it calms down. Today it didn't, felt like it's been with me most of the day.
I think the most important question I need an answer to is what is the next step if Bill's heart won't allow him to have the procedures in LA. And if the condition of his heart won't let him have the procedures does that also rule out having surgery. My mind whirls.
I'm not sure I'm looking forward to telling Bill whatever I find out.