Today I got a date for Bill's pituitary surgery. We will be back at MDAnderson with Dr. McCutcheon. Surgery will be Friday, August 14, with consults the day before.
Not sure whether I'm nervous, scared, relieved, worried..... Just don't know what I feel.
What I do know it that this is the surgery that is probably going to change our lives the most. In what way, I don't know yet, although many scenarios run through my mind. Some good some bad. Some really bad.LOL
Jess seems to be doing okay on her lower dose of hydro. Two days now, we'll see how it goes. She must of been retaining water on the higher dose because today she looked smaller than the other day.
She has been helping move a hardware store. My boss & her husband also own a hardware store. It's moving to the south end of town. They are trading a building that they own for the building they are moving into. They've been at it pretty steady for over a week now & Jess is holding up. The twins and various others are also helping. I think they now officially have everything moved.
In a few weeks we'll start to move Colby Photo. We will be right next door to the hardware store with a doorway between the two. I'm looking forward to being moved but not to moving. We've been in the same location for sixteen years and have accumulated a lot of stuff. It will seem strange to be out on Range instead of on Main St.

I have heard it said that some doctors discourage too much reading on the internet. Some days I would agree as there is a lot of incorrect info out there. For instance, I found this today.

Cushing’s syndrome is a hormonal disorder caused by prolonged exposure of the body’s tissues to high levels of the hormone cortisol. Sometimes called hypercortisolism, Cushing’s syndrome is relatively rare and most commonly affects adults aged 20 to 50. People who are obese and have type 2 diabetes, along with poorly controlled blood glucose—also called blood sugar—and high blood pressure, have an increased risk of developing the disorder.

I found it here http://www.endocrine.niddk.nih.gov/pubs/cushings/cushings.htm

I would think that they should know that those are symptoms not causes. And it is on a NIH website. Oh my. Now wonder everyone, except the patients, are confused. Maybe someday the medical world will catch up.

Jess weaned some on her hydro today. We’ve been thinking for several days that she was too high. She couldn’t sleep last night and she was pretty emotional off and on yesterday. She dropped from 20 mg in the morning to 15 mg. We figured that if it was too big of a drop she could always take another 2.5 mg. I think she did okay, we’ll see how it works for a few days.

Bill is coming home tomorrow morning when he gets off work. He’ll have to go back tomorrow night. He needs to pick up some prescriptions I picked up for him. He gave in a few weeks ago and asked the doctor for some heavy duty pain meds. He said if takes enough it almost makes the pain bearable. And truly, he’s no wimp. Hope his upcoming surgery gives him some relief.

I think I must be warped. I’m sitting here watching Two and a Half Men. It is so strange and I find it so humorous in a warped way.

Still messing around with all this. I found Windows Live Writer. Another blogger posted about it. If you’re interested in using it go check it out on her blog, she’s got a great quilting blog.

I have found the best thing about it is that I can move photos around inside my post. I have never been able to do that with Blogger. I think I’m supposed to be able to but it has never worked right. So if I was putting photos in my post I had to plan and put the photos in in reverse order that I wanted them to show. If I did it wrong or changed my mind I just had to start all over. Using Live Writer, I can just move the photo.

I’ve never known whether it was Blogger or my computer that was causing the problem. But it no longer matters because I can use this program and it posts straight to my blog.

 

There are some other cool features that Windows has that I’d never checked out until today. I’ll have to look into them a little closer because I think there are a few that would come in very handy.

The one weird thing is that when Jess opens my blog, it doesn’t have the different fonts. Makes me wonder if anyone besides me sees the other fonts I’ve been using that aren’t on blogger.

 So, now all there is left of this post is to look at the photos!

 

Since I’m playing with my blog today I’ll show more old photos. I could find no photos of Sam by himself, not even on his birthday. What I have noticed is that there are a lot of Myrna by herself. That makes sense as she is the oldest. I am number five (of six) and the photo below, with three candles on my cake is the first one where I have the frame to myself.

I do understand that. I only have two kids and take a lot more photos than my mom did. I have so many more of Justin when he is little than I do of Jess. But to make up for it, I think there are more of her as they get older and less of Justin.

Judy, age three

 

Myrna with what looks like 10 candles on her cake. I don’t think there is a candle hiding.

 We’re sure this is Sue. It looks like there are only two candles on her cake. So this is an example of why we can’t go by the dates on the side of the photos to help us figure out who is in the picture. Sue was born in Nov. of 1955. Look at the date on the side of this photo. I decided that the dates are only good to eliminate anyone that hadn’t been born yet.

Elsie was turning six. I like the way Sue is peeking out the door. This couch set on our front porch for years and got very ratty. Thankfully we lived in the country and not many people saw it!

Looking at these old photos makes me really stop and think about how the house has changed over the years. It’s hard to explain to someone that didn’t grow up there. At first the photo of Elsie looks like it was taken on our front porch but I’m sure Dad has said that he built that end of the house sometime after Sam was  born in 1957 so it wasn’t there when Elsie turned six. Besides, our front porch/living room doesn’t have full length windows like the photo. The only windows like that on the east side of the house are in the dining room. It now has a porch in front of it, so that means the kitchen porch wasn’t always part of the house.

 I recently scanned some old photos that I got from my mom years ago. There may be a few more I need to find before I can put them on a cd for my siblings. Granddad (maternal) is holding me and Myrna, Sam, Sue & Elsie are gathered around him.

 

I really like old photos. My mom didn’t take a lot of photos. At some point my oldest sister got a camera and took a lot of photos. Unfortunately those photos somehow got lost over the years. I also took a lot of photos starting when I was about 10 or so. I’d bought myself an instamatic. But since I’m one of the younger children, there are a lot of years lost between Myrna taking pictures and me taking pictures.

In this photo, Sam, myself & Sue are with Elsie, celebrating her birthday. I’m guessing that Myrna took the photo.

At the moment I’m just kind of testing out a new way of posting. It gives me a lot more fonts to play with. I’ve always used the same one but am getting tired of it, it’s boring, although very easy to read. So I think I’m going to start messing around with fonts. And see how this actually posts. It may not look anything like what I think it will.

Today turned into a family day. Jess & I were picking Dad up and taking him to Hoxie to eat lunch at a horse show that some of my family was participating in. My sisters' families have always done horse shows. Now the second generation is starting to show and the older generation (my nieces) are starting to judge.
My niece Shanda was the judge for this show. There is never a problem with her judging her cousins. I think she may actually expect more from them.

She is timing barrel racing.

My (great) niece, Isabella was in her first show today. She told me that she trotted, she was very proud of herself for that. She also got a blue ribbon. "And I got candy too. Ribbons are fun, so is candy." She's so cute.

If you were to ask her what her participation number was, she would tell you "eleven, two." How funny.

Her brother, Jordan is older and was in more events. He rode and rode and rode when he wasn't showing. I heard him ask his mom before an event "Can I go as fast as Goldie can run?" Mom's answer was "no."

Riding all day makes a cowboy thirsty.

Jordan and Goldie having a talk.

My nephew, Jay also was there. He's been showing horses since he was very young. He's an uncle to Jordan & Isabella.

Two of my sisters were there. Elsie was calling the show. Sue probably came because she likes horse shows and misses them now that her girls are grown. She is also Shanda's (the judge) mom. One of my SILs showed up about the end of the show. She then took Dad out to supper and then took him home.

And of course my niece, Amanda was there. She is the mother of Jordan & Isabella.

Elsie's husband, Ronnie helped set up the arena for certain events. He really shouldn't have been because last night he was flipped off his four wheeler in the pasture and looked to be pretty sore today.

Somehow I managed to fall asleep for awhile in my chair. I missed several events that Jay & Jordan were in. But Jess used my camera and took a lot of photos. In fact I need to give her credit for the picture of Shanda that I used.

All in all it was a good day. Kind of long and warm though. Not hot, just warm.

Bill's MRI finally made it to MDA today. That is two weeks since I sent it. But that happens every time I send something there. I always think, I'm in Kansas, there is only Oklahoma between me and Texas!! What can possibly take so long.
But anyway, it's there now and we can get on with the business of setting up surgery. This sounds really stupid, as it was only about a year ago I did this for the kids, but I really can't remember how this all works. I can't remember what tests need to be done pre op. Guess I'll find out.
Lately I keep looking back over this long Cushing's journey we've been on. My feelings change - a lot. Mostly, I'm thankful that we've come as far as we have. Other times I just get angry and wish that none of this had never happened. Then I think of all the knowledge I've gained. Of course most people go through their whole life and have no need of this knowledge!
I've changed in so many ways. Probably the best is that I have learned to stand up for myself, or in this case for my family, pretty much the same thing though. I couldn't do that even three years ago.
At the moment I'm writing a letter in my mind. I need to send it to our (now) PCP. He was our PCP back when I was first looking for answers for Justin's health problems. He was the first doctor to dismiss the problems. He had a comeback for everything. So we moved on, as I was determined that someone would take us seriously.
Through a turn of events in the medical community, we recently had to change PCPs again and are right back where we started. Dr. M may be on the way to redeeming himself. He did pretty good with Jess while she was in the hospital. And is following up with her.
During one of her hospital stays, the subject of Justin came up with Dr. M. He asked how he got a diagnosis and if he (Dr. M) had missed anything. I couldn't really say much when he asked as he was making rounds and had all the troops with him. It just didn't seem like a good time to tell him that he missed all the obvious, central obesity, moon face, stretch marks. And those were just the physical symptoms.
Also, I have a hard time saying things like that in person. But if we're going to continue to be in his care, I really need to get this off my chest. I want him to know that he really should have paid more attention to Justin and me. Please, don't be so dismissive of your patients.
I have to get it on paper and then actually mail it. I think we'll have a better "working" relationship once I get it off my chest. Of course an apology from him would go a long way but I won't hold my breath.
Another thing I learned through all this, I no longer just follow the doctor. Funny, I did for years with my own health though.

A piece of flair I saw on Facebook.

At the moment life would seem almost normal if we didn't have Bill's surgery looming over us. And I try not to think about that too much. But in the mornings when I first get up to do papers, I have a very heavy feeling in my body. It takes a moment to identify the source of the feeling. Quite often by the end of papers my legs feel a little like jello.

My biggest problem with MDA is mail. I'm not sure that I've ever sent anything there but what I had to send it again. I think it gets hung up somewhere in their mail room. Very frustrating.

Waiting mode is hard - I want to know the ending NOW.

Jess has now gone a complete week without throwing up. I hope that means she is out of the woods. She has weaned back down on her hydro and today only took 20 mg in the a.m. and 5 mg in the p.m. It seems like she's done okay on that dose. This is the dose that Dr. F prescribed for both J&J upon discharge after their BLA.
J&J both went with me to take Dad to lunch yesterday. Justin only goes sometimes and Jess hadn't gone with me since the Saturday before we left for Milwaukee. Actually I think I have only been out to take Dad to lunch once (before yesterday) since we returned from surgeries.
Bill kind of gave me a scare last night. He's staying in Plainville because it's close to the rig location. I usually call to make sure he is up in time to get to work. He has such a hard time waking up if he ever gets into a deep sleep. By the time he answered his cell he had 77 missed calls from me! Yes, I was getting worried. I didn't know if something had happened to him or if he just wasn't waking up. I didn't know whether to worry that he was in bad shape medically or just worry that he wouldn't wake up in time to make it to work. If he ever gets rid of Cushing's I hope his sleep/waking up problems go away.
I'm actually getting some stuff done around the house today. It's not real noticeable as there is so much that needs done, but it's a start. When it cools off some tonight I really should go out and mow. UGH.
Earlier today I went out to the Experiment Station and took some photos. It's one of my favorite places to take pictures.

I'm thinking of starting on the quilt block for $5 Quilt. I'm just a tad more industrious than I am most days. I keep wondering if the kids really remember when I kept the house neat (mostly), got meals ready, kept up with laundry and did things for myself. I remember, I just wish I still was like that. Maybe it'll come back to me.

After church today, someone was asking Jess how she was, then she turned and asked how I was. She then said something like this has probably been hard on me too and I should take care of myself. I know she meant well, so I didn't laugh.

Jess had a follow up appointment with Dr. Matchell yesterday. She had blood work in the morning. Even though she is feeling good some of her labs are off again. Mainly ones with her liver and pancreas. So he's going to order an MRCP -

Magnetic resonance cholangiopancreatography (MRCP) is a medical imaging technique which uses magnetic resonance imaging to visualise the biliary and pancreatic ducts in a non-invasive manner. This procedure can be used to determine if gallstones are lodged in any of the ducts surrounding the gallbladder.

Hopefully, either something shows up or the labs fall back into line.
Bill's staying in Plainville while the rig is on location there. Things aren't going the best with work. Besides him being sick, there just hasn't been as much work as usual. Starting now, the company is no longer paying any expenses. Since a rig moves from location to location it sometimes is a long distance from home. So the company has always paid mileage if the rig is over a certain distance from your home. And if the rig is located over a 100 miles from home they will reimburse some for a hotel room. That will take a bite out of our budget now.
But some companies have been laying off, cutting wages or the company is paying less of the insurance premium. All in all, at the moment if you work in the oilfield, it's not the best of times.
I wonder how it will all work out when Bill is off work for surgery. Of course I really wonder how long he will be off. In my worst thoughts, he's not able to return to work.
I need to make a list of all I have to be thankful for because at the moment it just seems like bad on top of bad.

Well, it has been four complete days that Jess has gone without throwing up. She seems to be feeling and acting so much better. So glad that is behind her.
We got pathology reports from both kids the other day. I don't have the exact numbers in front of me but both kids had adrenal glands that were more than twice normal size. I do remember that Jess' were a little bigger than Justin's. I guess overwork causes over size!
I think Justin is thinking of going back to work in a couple of weeks. I just wish he felt as good as Jess seems to feel. I think it will come with time.

This may be a red letter day. It's almost 11 p.m. and Jess hasn't thrown up once today!! Although yesterday she did throw up twice. Her usual in the morning and then once late in the evening. I'm hoping that wasn't today's and it just came early.
She's eaten a fair amount today and things are still good. Almost hate to get my hopes up.
I really think it's time for her to wean some.
I'm thinking of calling the doctor tomorrow and asking to not have her test scheduled. At this point I think it would be a waste of time.
I need to get Jess and Justin together for a picture. I want them to wear the same shirts they wore when we had our initial appointment with Dr. Chiang. Since we took a photo with him then, it would be easier to compare how they are doing.
I've called MDA to start the process of setting up Bill's surgery. Wonder if they've changed things in the year since I set up the kids. They never asked for labs, although when I asked, she said I could fax them if I wanted. I was just to send the CD with his MRI.
Supposed to rain again tonight. I think this is the wettest spring we've had for a long time. We haven't even had to water our lawn. Although a lot of other people are watering. This is one of my pet peeves. There has been talk for years about our water table getting lower and lower and there are still many people who waste a lot of water with their automatic sprinklers. So annoying, when I'm doing papers in the morning I see sprinklers coming on and it's either raining at the time or it just quit. I think they should take the sprinklers off of automatic and turn the sprinklers on manually.

A little bit of normalcy today, a bridal shower for my niece, Shanda. She's such a nice gal. Pretty too, don't you think?
Sister, Tanya, mom, Sue, Shanda, and mother-in-law to be, Jane - good looking group

Jess (doesn't she look good?) and one of her favorite little cousins. She used to go and play with Liz and her brother about once a week after school. She didn't see them much while Cushing's was taking over her life. I'd say Liz missed her.

Shanda & Tanya with their niece, Emma. We were playing a game to see how much we knew about the bride and groom and how much they knew about each other. For every question Shan got wrong she had to put another piece of gum in her mouth. Looks like it's getting pretty full in there! She cheated some and had Emma chew it.

Good drinks and good food, which seems to be mostly gone.

After the shower, we took my dad out to eat supper. I tell you, Dad has lost his "edit" button. As we were about ready to leave to eat, my niece, Tanya and her baby (4 mo) showed up. As Dad was looking Oliver over, he said to Tanya "Well are you going to raise him or drown him?" It cracked us up. Tanya thought it was funny. But I swear, Dad now says things that he probably never even used to think. I've gotten used to it, even when he says things in public.

Jess is doing fairly well. For the most part she just throws up once every morning. She did get in an extra one tonight though, maybe too much ice cream? May not take much to be too much at the moment. Her stomach must of contracted a lot with as little as she has eaten in the last six weeks.

Tonight Jess said that maybe there are hormones off and it's like being pregnant and having morning sickness. Could be something to that. There does seem to be a lot of similarities between Cushing's and pregnancy. But there is a definite end to pregnancy.

I think it might be time for Jess to wean some. She has been taking 45 mg since getting out of the hospital. Her face is breaking out some and she's been just a bit emotional. Signs (I think) that she needs to wean. She said she'll try 35 mg tomorrow.

Tomorrow we should make it back to church. We haven't been since the day before we left for surgeries. Either four or five Sundays now that we've missed.

I've neglected my blog for awhile now. Jess being in the hospital for the second time since having her adrenals removed, just really threw me into a tailspin. Wonder if something like that is visible to the outside world? Seems to me I acted just like I always do, but felt like the world was spinning out of control with nothing or no one for me to grab onto.
I know this makes it sound like it's all about me, but it's not really. Cushing's and all the aftermath affects everyone in the family. I can really only tell it from my view point, which is not that great a lot of days.
There were days I was so afraid that this might be Jess' life from here on (but she said she wouldn't blame me until after I was dead!!LOL). That would make me so sad - and angry. It's now been a little over five weeks since her BLA. It was five weeks ago today that she started throwing up, and it still continues. Things are improving. I think she only threw up once today, very early this morning. It wasn't much. She seems to feel better, most of her lab work is starting to fall back into place. We'll check it again next week. Hopefully no more hospital stays. She is able to eat some, but not much at a time.
I expected that there could be some problems after a BLA but five weeks of vomiting was not on the list. For some reason I had always expected that it would be Justin that would have problems. In a way that would of been so much harder since he doesn't live with me any more. But I have figured out that I think he is listening to his body more closely than he used to. I think (hope) that he has figured out that having no adrenals puts his life on a little different level.
With Jess being sick I was starting to feel a lot like I did when I was first looking for answers for Justin, which was either three or four years ago. I lose track. I didn't realize that I was starting to forget exactly how desperate I was back then. I realized it had gotten a little easier over the years because I found direction and learned how to proceed through the medical community and found a support group. But I was back at square one again and feeling that same desperation. The biggest difference was that this time there were people to support me from the outset.
My theory (at the moment) is that she did have a mild case of pancreatitis that is now correcting itself. We'll see. If her numbers improve more next week (and she does too) I will know that I'm right. Maybe not proven, but settled in my mind.
What has surprised me is that this has all made me so angry, not at anything specific, just angry. I expect that will go away with time and as Jess improves.
People have been so kind, but the thing that always got to me was that they don't really know. They think they do, but they really don't understand how things just pile up on top of each other and everything affects something else in life. When things are going good (when?) that just means that things are better but when things are going wrong and it piles up - well it just turns into a mess.
I think I'm getting angry again.
Jess learned last night that in the time we have been gone from church (should be back this coming Sunday), Dr. Matchell's family has started attending. That will seem just a bit odd as the jury is still out on him. I can't remember how many times he has told me in the last three weeks that we need to find an endo. Oh really? Duh. But do you have any idea how hard that is? The very closest one is three hours away. He says this shouldn't be hard, this is what endos specialize in. Oh, yeah, I'd forgotten they know so much. I'm not sure he understands that a first appointment with an endo really is just to size them up and see if they have any idea how to manage the kids health. The first one I pick to go to may not turn out to be the right one. It's like each first appointment is really an audition. We just hope we get lucky the first time.

Jess is home from the hospital. It has been a little over 24 hours since she last threw up. It's as if she turned a corner last night. I sure hope it stays that way. She's very tired and has been sleeping for a while. We'll have a follow up with Dr. Matchell this week. I'm going to ask him if he will have lipase checked when she has blood work done. I actually don't know much about that but know that it is connected with the pancreas and the few times hers has been checked lately it has been high. If the numbers are falling that could very well have been the cause of some of her problems. I'm thinking if the number is falling and she continues to keep food down we may not have to go see the GI. That would be nice to have this problem correct itsself. Poor girl has really had a tough time since surgery.
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I was gone for about 1/2 an hour and when I got home Jess had thrown up while I was gone. I no longer know what to think.
I think I had more I was planning on saying but can't seem to think of it at the moment.

I'm starting to feel like I did back when we were first looking for answers to Justin's medical problems. I think the difference this time is that doctors really believe she has a problem.
Friday we thought things were getting better, she seemed to feel so good and went many hours without throwing up. But that has changed. I think at the moment they are going with the theory that severe acid reflux is causing the vomiting. But she is on massive doses of protonix (IV) and it doesn't seem to be helping all that much. Although she isn't throwing up quite as much as when she was admitted to the hospital.
Today she gets a referral to a GI. Hopefully Dr. Matchell will get to talk to Dr. Johnson. I hope he has ideas. There is talk of doing an Endoscopic retrograde cholangiopancreatography (ERCP).
There are days I worry that this is what her life will always be. I feel so bad for her.
My computer is having a problem with Blogger. Sometimes it won't open blogs, including mine. I can no longer copy and paste. Annoying as I can't even copy links. Oh well

Two countries salute chocolate on their national coat of arms. Fiji features a cocoa pod and Ghana features a cocoa tree.
Tuesday
June 2

Bill has been gone since Saturday. The rig moved to a location that is over two hours away. It's easier for him to stay in Hays. I was sure that I'd get some house cleaned while he was gone but not so far. I sit around and stew about why Jess has been vomiting for almost a month now. I keep searching for answers but so far have none. The doctors don't seem to either.
I posted her labs on the board and am getting some ideas. Mainly it's reinforcing my ideas about either her gall bladder or liver. I just feel so bad for her. In fact, in some way I feel responsible. I suppose because this started after her BLA and I was the one that okayed that. Every morning I wake up hoping that she will of made it through the night without throwing up. Every morning I find out she hasn't made it through the night.
We will get to the bottom of this.

According to a 2007 Consumer Reports
taste test, Hershey's Cacoa Reserve Extra Dark with cacoa nibs was
rated the best tasting dark chocolate bar on the general market.
Monday
June 1