Wednesday, July 30, 2008

Bill's pit MRI from Cedars was read as normal. Dr. F is leaning towards aldosteronism and is also having him continue to test for Cushing's. As soon as I got Bill's report from Dr. F, I wrote Dr. McC and asked if he'd look at the MRI for us. He is soooo nice. I had to send it twice as the post office in Houston seems to mess up most of what I send there! So I sent the second one last Wednesday.
I haven't posted anything on the boards because I think there are still people who sent their MRIs quite some time ago that are waiting for responses from Dr. McC. I was thinking I might get a fast response just because we were there a couple of months ago for J&J's surgerys and he knew that we suspected Bill might have Cushing's. I got a response yesterday afternoon which is MUCH faster than I expected. Here is my letter to him & his response:

Dear Dr. McCutcheon,I hate to take advantage of your generosity
but need to ask if you would be able to read my husband's pit MRI. He saw Dr.
Friedman about a month ago and had an MRI while in LA. It was read as normal.
His adrenal MRI did show an adenoma but I would like to know that all bases are
covered by having another opinion on his pit MRI.Thanks so much. You're such a
great surgeon to work with. You were a big help with the kids. Justin & Jess
seem to be doing okay. I guess it's just a matter of getting them weaned off the
hydro and see where everything falls.Judy Kennedy

Dear Ms. Kennedy,
Thanks for sending me your husband's
MRI, I have looked it over and it is interesting. There is a small area on
the left side of the gland that shows dark, and is consistently seen on dynamic
as well as conventional views. If there is an adrenal abnormality as well,
and if he shows high cortisols on the hormone workup, this is one where petrosal
sinus sampling and/or adrenal venous sampling would perhaps be helpful, to clear
up just where the source of trouble is. I have never yet seen myself an
intergenerational family linkage for Cushing's, although I know it has been
reported in the literature, but you might have the first such group if this pans
out! Thanks for your kind words about the surgery on your two
children. Let me know if I can help further,

I actually feel some better after getting his response. We're waiting for results on several tests and Bill's doing a midnight tonight. I'm so confused on his testing. Guess I would feel alot better if he started pumping out highs! Of course, we don't have many results at the moment. There's something that just tells me that he has Cushing's also.

I know there is another trip to LA in our future as Dr. F wants Bill to have an adrenal venous sampling. He says this could confirm aldosteronism and/or Cushing's. I'm not sure what he's thinking now as I know that Dr. McC sent a copy of his reply to Dr. F also. I'm kind of glad he did. I'd debated at what point in testing I would send the email to him. Now it's done.

We won't be going though until we're able to pay the credit card down enough that we can put another trip on it. I hate doing it that way but I don't see where we have a choice. I said a long time ago, when Justin was the only one I knew was sick, that I was willing to go into debt to get him well. Well it's come to pass - three times over!!

Sunday, July 27, 2008

Jess & I made it back to church today. We've been pretty hit and miss for the last year or two - my fault. I have always attended regularly but it seemed tougher and tougher to force myself to go once Justin really got sick and then Jess, and then this and then that.... I guess I sometimes feel like we're on display, then I realize that everyone has their own problems and ours just aren't that important to most people.
Although it does bother me some that the pastor has never once inquired about the kids' progress or how Bill is doing. I know he is fairly new and came about the time things were really getting rough for us and we weren't attending as much. When I sent email updates I always sent it to Pastor Tim also. I never got a single response from him. Somehow that makes me feel very insignificant, and it shouldn't. Now, he did stop at work and talked to me before we left for LA the first time and had us come to the board meeting to be prayed for. He also stopped before we left for surgery in Houston.
I have discovered that my email updates were forwarded to a lot of other people, which doesn't bother me, although it surprises me. I believe some even made the rounds of some of the teachers at school and a lot of church members also received the updates through forwards. I haven't sent an update for a long time, have no idea what to say - we wean, watch and wait.
So that brings me to the subject of progress. At this point (10 weeks post op for both) I can honestly debate and win the fact that they each have a cure and the fact that neither have a cure. I guess that's why it's a waiting game.
Justin has grown an inch since surgery, he's now 6'1". I know that guys tend to grow for longer than girls but I find it funny that he grew an inch in the first month or so after surgery. He has also lost quite a bit of weight. But - he still doesn't feel any better. I pray that will come with time. It could be encouraging that he could not withhold for a full day to do a midnight blood draw. Tomorrow he's weaning to 12.5/5. He says he never really has felt a difference with any of his weans. I'm also not sure about his living situation, but don't think he cares enough most days to actually think it through. But that really isn't something I can help him with unless he asks my advice.
Jess, feels pretty good and has had a very easy time weaning. She's at 7.5/5. She's debating whether tomorrow she takes off her 2.5 mg from her a.m. or p.m. dose. I really think that her adrenals are working. She seems to be high in the mornings after her dose, but isn't by afternoon. She has actually gained weight but when I saw her yesterday for the first time in four days I could tell that her face seemed thinner and her tee a little looser.
I guess only time will tell.

Saturday, July 26, 2008

I'm done with papers and really need to go back to sleep or I'll never stay awake to drive to Hoxie. I'm going over to pick Jess up. I'll probably get there in time to watch part of the 4-H auction. Then we'll eat with Dad and whoever else happens to be in town.
I stayed up way too late last night talking in the chat room. I seldom do that. It was fun and it helped cheer me up. I think I've been in mourning for our family, wondering if we will ever get back to "normal". I know it will never go back to the way it was - there is no going back. Before Cushing's reared it's ugly head Justin still lived here. Both kids were good students and seemed reasonably happy. Justin will probably never live with us again, I miss that as I feel like he got sick about the time I was starting to get to know him. We're on new footing now. Bill now works nights which changes the whole makeup of our days. With what I know now, I'm sure he lost his job in trucking because of Cushing's (or whatever he will be diagnosed with). But if he was in trucking at the moment he would never pass his physical.
I spent alot of time downloading music last night. Alot of oldies and some newer stuff. I find myself attracted to music that was popular about the time Justin was really getting sick. I wonder sometimes what my compulsion is to relive the really bad times. Maybe as a guage? I know I sometimes go back and read some of the first topics I started on the boards and it always makes me cry. I seem to have a need to never forget this whole experience - like I could!
Lately I read the boards but can think of very little to say. For some reason I feel very isolated, even there. It's noone's doing, I just feel that way. Maybe I just want to make myself miserable, maybe I need some good anti depressants, again. Maybe I just want to remember it to know that we have survived. I don't know if we are stronger for it, but we have survived - so far.

Friday, July 25, 2008

My mind is messing with me these days. I get so angry. I've always been pretty easy going. Something has changed since my family has gotten sick. I only have to see a group of kids hanging out together and it just makes me furious. Classmates of J&J's come into the store and it immediately makes me mad. It's like why are you flaunting yourself, your normalness, at me. I know most of them don't even have a clue that the kids had/have Cushing's. That makes me angry too! I wonder how my kids can have such serious life altering diseases and so many in town be ignorant about it.
I hate having mothers tell me that their child is ready to start their second year of college and Justin still needs 2.5 credits for high school. I'm not embarrassed about it, it bothers me for the kids. I wish they didn't have to go through all this.
Bill......I don't even know yet how to express my emotions about him being sick.

Thursday, July 24, 2008

Jess is at Elsie's this week. I'ts Hoxie's fair and Elsie has her grandkids. Jess has been there to help the last two years and wanted to stay again this year. Myrna is always there. So they have a full house.
I understand Jess took the kids to the carnival tonight. Jackie also had her girls there, Shannon & Melissa & her kids were also there. Bet they had fun.
Saturday I'll go over to Hoxie and pick Jess up. Will probably eat lunch with Dad too. Elsie will have taken him to town with her for the auction.
I do enjoy the time I have alone but I also miss her company! Can't have it both ways I guess.
I didn't see Justin today. He must be feeling okay or I'm sure I would of heard.
Tuesday Jess & I did something crazy. My hair was driving me crazy, getting too long. We cut it!! Ourselves!!! I kind of messed up the right side a little but if I put that side behind my ear with a clippie you don't really notice that that side is somewhat shorter. Besides, I've noticed the longer our family continues on this Cushing's journey, the less I really care about how I look. I was never that big on it to begin with, but now.....
I guess just one more thing written off. I know that it seems like I should be able to just "snap out of it". I only wish it was that easy. It was hard with both kids going through it and now wondering how it will all play out after their surgeries. But in some ways it's much harder with Bill. It scares me to watch him go downhill. He has always been so strong. Now, somedays I'm afraid he will get bad enough that he'll have to quit working.
That scares me for two reasons. First, I hate to see him get that bad. Second, if he can't work, we have no insurance. I have no idea how we would survive without that. We all need it soooo bad. I also don't know how we would survive on just my salary. I'm sure at some point Bill could get disability, but without insurance it would be near impossible to get him a diagnosis, withut a diagnosis, I'm not sure he would qualify for disability. Some days I'm sure it will be fine, others, I'm not so sure. I guess all we can do at this point is pray, ALOT.

The kids have orders at the lab for 8 a.m. draws. We need to see what their cortisol levels are at this point. I'd also like to get some orders for midnight draws, I think that could tell us more. Jess seems to be able to wean pretty well. I think she must be producing cortisol on her own. After she takes her morning dose, some days it seems as if she must go into a high as she has told me that she'll get canker sores in the morning and they'll be gone by afternoon. Canker sores were an indication of a high for her when she was testing. Sometimes in the morning I can also smell her "weird" smell, that she used to have before surgery. I always presumed it was high cortisol.
Justin was going to do a midnight last night (until we found there were no orders for that) and an 8 a.m. this morning. So he was going to not take any hydro all day yesterday. I did tell him if he felt he needed some to go ahead and take it, he could test some other day. He ended up having to take a dose last evening. I guess that is maybe a good sign that he has a cure? It's so hard to tell. I do know he seems to feel about the same as he did before surgery and I think he was in a low then.
I guess time will tell for both of them.
Bill hasn't done alot of testing yet. Dr. F would like him to get a venus adrenal sampling done. It would test his aldosterone and his cortisol. There is a tumor on his left adrenal gland. He also wants Bill to have his growth hormone checked with a stim test. Not sure when we will be able to get that done. His pit MRI was read as normal, I have sent it off to Dr. McCutcheon for his take on it. I just want to have all bases covered as I know that alot of tumors don't show up on glands. Justin's never showed. Even though he has an adrenal tumor it doesn't mean that he couldn't also have a pit one also.
I sent the MRI off last Thursday - priority mail, delivery confirmation. Check the post office web site yeterday and saw that it got to Houston on Sat. by yesterday it still had not been delivered as it said they were waiting for someone to come pick it up after they left a "notice". That made me just furious, for several days I was under the assumption that the CD was at least sitting on Dr. McC's desk waiting for him to have time to read it. Delivery confirmation does not need a signature. Think I will call the Houston PO today and see if they can tell me anything,
Bill started with his fourth bp med the other day. Wonder if four together will keep it under control, somewhat anyway. He also started the testosterone gell and vit D. We'll see if that makes any difference. I'm afraid that sometimes these problems won't resolve until the underlying problem is gone.

Sunday, July 13, 2008

Been very lazy today. Some days I just can't get with it enough to get any work around the house done. I may not be the one with Cushing's but it has definitely had an affect on me. I quite often feel as if I'm slogging through deep water. Probably some anti depressants are in order, again.....but it takes energy to go about getting them. Oh well, I just slog on through.
I've been wondering at what point will I ever stop worrying that the kids will have a recurrence, of course that's presuming they have a cure this time around. And of course I have no idea at what point we figure that out! Gee, if only it was somewhat easier than this.
Bill just left for work, noticed he had a pee jug with him. There is also one frozen to be sent in. I've been checking email about every hour for the last few days. It's probably about time to get the initial email from Dr. F pertaining to Bill's office visit and his imaging and labs done while we were in LA. It's already been longer than it took to get the reports on the kids last year. I know from experience, it comes when you're least expecting it.
I'll try not to think about it.

Saturday, July 12, 2008

Today Jess & I went out to the farm and picked up Dad to take him to lunch. Bob's little girls went with us. They always make the meal much more entertaining! Dad is so hard of hearing, it's somewhat hard to have a conversation with him in public. Some things you just don't want to shout for everyone to hear.
When we got back to town we helped IQ Academy with an open house here in Colby. I'm still debating whether Justin should enroll at IQ or stay with the Learning Center in Colby. If I was more confident that he has a cure and was on his way to getting his short term memory and concentration back, it'd make it easier to decide.
I'm a bit confused on both kids and where they stand cure wise. I can argue and win the pros and the cons for both of them! Jess again has her "odd" smell. Not as often as before surgery but it's there. One possibility is that her adrenals are producing cortisol on their own and her replacements put her in a high. On the other hand, she may not have a cure. It's all pretty much wait & see. She weans another 2.5 mg on her hydro on Monday. We'll see how that goes.
Justin seems as if he is "low". Pretty much how he has felt since surgery, just like he felt before surgery. He says he doesn't feel much different after taking his hydro.
It's now been right at eight weeks post op for both of them. I guess time will tell.

Thursday, July 10, 2008

Odd music

I'm sitting here listening to the soundtrack of Juno. It's a little different. It almost sounds like folk music, the words are anything but! Jess & I rented this movie one night. I was surprised at how much I liked the music. I finally just bought it off iTunes. I go through spells of listening to it almost nonstop. I find the words fascinating. I think alot of the words remind me of Cushing's, which really seems to do a number on the mind. I think when I really get into the Cushie thoughts and feeling so bad for everyone that has it, is when I play the music alot.
Originally the songs made me think of Justin. He has had a rough time mentally & it's so hard to see your child like this.
So, sometimes I just sit here and listen to the music and some of it makes me cry. Some of it reminds me of Cushing's support board members.
You know how sometimes you hear an old song and immediately have a rush of feelings from some previous time in your life. I know that if I was to hear one of these songs in twenty years or so, it would probably bring me to tears. There's no way I would associate these songs with anything but Cushing's now.

It's been almost two months

It's been almost two months since J&J had their surgery to remove their pituitary tumors. I'm at a loss about what to think. I have no idea if either of them have a cure. We will do some blood work soon & it may give us an idea. But then again, if they aren't cured and are still cycling it may tell us nothing. I'm a little nervous about having it done. If their cortisol levels are elevated I'm not sure what the next steps will be other than I know I have to consult with Dr. Friedman.
Bill is doing his testing. The only result we have so far is a midnight serum and it was slightly elevated but not diagnostic. Still waiting for Dr. F's summation of his initial office visit.