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.

Friday, November 7, 2008


Well, it's been about a month since we started this whole process of getting ready for IPSS & AVS. It was 10-10-08 when Bill got his physical, bloodwork & chest x-ray. Now we're still waiting for stress test results. Cedars called today. If Bill can't make his appointment next week, (he can't) he will have to redo the physical, etc. Guess the results are only good for about a month. Makes me think if we don't get results of the stress test soon, those results will not be valid either & we'll be clear back at the begining of this circle.
On a better note, the phone appointment with Dr. F has been moved to this Sunday. I'm going to ask what happens if Bill can't have IPSS & AVS.
I'm begining to feel like I'm just beating my head against a wall. I want to quit. Probably if I was doing this for myself instead of Bill, I would.

Thursday, November 6, 2008


Yesterday I got MRIs set up for J&J in Denver with a 3T machine. The best thing is that they are set up for first thing on a Monday morning. I need to go to Denver the day before to get Jess from the airport when she gets back from NY. So we can do this all in one trip. Am not sure yet if Bill will get another one. We have orders for one if he wants. The gal said to let her know and she could work him in too.
The bad news is that we still don't have the results from the nuclear stress test. I'm starting to be seriously annoyed, one step up from annoyed. No results tomorrow and I will be majorly ticked off. But I don't know how to force the issue, getting mad on the phone will not help get the results faster.
Tuesday we were told that it was on the doctor's desk and Thursday (today) would be THE day. "And doctor always is good about taking care of what's on his desk."
Well "doctor" has had this on his desk since last Friday from what I was told then. I guess it will all work out, it's just frustrating.
Last night Jess and I went over to the Grinnell VFW and met some of my family for supper. The VFW serves chicken fried steaks and mountain oysters ("nuts" in this neck of the woods) with baked beans, potato salad, cole slaw, chips, bread, corn, green beans, the first Wednesday of every month.You can run into half of two or three counties there. We had a good time. I think Elsie takes Dad just about every month. We all had a good time.
Saw Justin for a bit yesterday. Ardath told me he'd stopped by her place to talk about the stores roof that he finally finished yesterday. She said she asked him how he was feeling these days and he told her not very good most of the time, but better than before. He's doing a midnight tonight.
Bill must be cycling almost daily as his mood changes daily - or more. That must be exhausting for him. He's still staying in Hays because it's closer to where the rig is.

Wednesday, November 5, 2008


Still needing results of Bill's nuclear stress test. It was last Monday. After the test they told him 2 -3 days. This past Monday they told me Tuesday for sure. Yesterday (Tuesday) they told Bill if we hadn't heard anything by Thursday to call them. I'm begining to think we'll never get results.

Monday, November 3, 2008


In my inbox first thing this morning.
Re: Receipt for your Payment to Dr. Friedman's Endocrinology Clinic‏
From: Dr. Friedman's Office
Sent: Sun 11/02/08 10:48 PM
Reply-to: Dr. Friedman's Office
To: Judy Kennedy
Judy - I don't know how I did it because I was on the computer all day Friday, but I did not see
this email, so I didn't schedule you for this weekend. My apologies.
Would Saturday night, November 22, between 7PM and 8:30PM, PST, work for
you? Dr. Friedman's

From: Judy Kennedy
Sent: Thursday, October 30, 2008 7:00 PM
To: Dr. Friedman's office
Subject: FW: Receipt for your Payment to Dr. Friedman's Endocrinology Clinic
Lynne,Here is my receipt for a half hour appointment for this Saturday, Nov 1.I cancelled the Nov. 12 appointments because even if the kids need to see him after the phone consult I don't think we'll be there that week. Bill had to have a nuclear stress test after an abnormal EKG and we don't have those results yet to fax to UCLA and Cedars, maybe not until next week. That
won't give me enough time to get set up and get to LA by the following week.I'm
sorry I keep changing thngs on you.Thank you,Judy Kennedy
Date: Thu, 30 Oct 2008 19:53:04 -0700
Subject: Receipt for your Payment to Dr. Friedman's Endocrinology Clinic
To: jkennedy265@hotmail.comFrom: service@paypal.com
I'm just frustrated that I was offered something immediately, took the offer, and now have to wait three weeks for the phone appointment.
I had the whole paper route to formulate my plan. I'm going out in a few minutes to ask Andy to order MRIs for J,J &B. We'll see whether Bill really wants another one. But I'm thinking if we could get a definite tumor to show up it could help his case.

Sunday, November 2, 2008


Well, I guess I could of saved my money for a while longer. No phone call tonight from Dr. F. I know he doesn't always call on time. But mine was set for sometime between 8:30-9:30 PST, which is 10:30-11:30 CST. It's now 12:30 and I must go to bed.
Papers will be here in about 3 1/2 hours. Afraid I'll oversleep tomorrow. Presses are running on "old" time. I really was looking forward to that extra hour of sleep either before or after papers. Now I'll really need it but won't help much as I'm so late getting to bed.
So p*** on it I don't really care at the moment. Except I thought I'd actually have a few answers.
Wonder how long it'll take to reschedule. If I'd known it wasn't going to work out after Lynne offered me this phone appointment I wouldn't of bothered putting the fee on a credit card. Would of saved it back in the checking account. Oh well, story of our life.

Saturday, November 1, 2008

I'm wondering when it became okay for newscasters to talk about how the early voting is going. It used to be that nothing could be said about results until the polls closed in California. Nothing to sway the late voters, as some want to back a winner. Or some would see their candidate winning and figure they didn't need to vote.
I just think it's wrong to talk about which way a state is swinging based on early voting.
Opening weekend for pheasant season here in NW KS. A few years ago it was changed to the first weekend in Nov. I really can't remember why. It had been the second weekend of Nov. for as long as I could remember. I was a waitress right out of high school and opening weekend was a biggy. It seemed half of eastern KS was in our neck of the woods. At least half of them were drunk by supper time. Made for really good tips.
There was a group from Wichita that used to hunt my dad's land for several years. All I really remember was that they'd bring a huge box of chocolates for Mom and us kids. I think the first year they either gave or wanted to give us some of their pheasants. My family wasn't real big on eating game. Probably why we got chocolates from then on.

Jess wasn't feeling very good when she got up to do papers. So when we got home she took some hydro (I think, she said she was going to) and went back to bed. Usually wouldn't worry about it but her last soccer game is in a few hours and she'd really like to play. Hope she can make it.


Can't forget to change the clock tonight.