Saturday, February 28, 2009

These people don't know their own silly business

We are home safe and sound. Got to spend last night sleeping soundly in our very own beds. YAY. There is a MAJOR winter storm moving onto Alaska from Russia and we just beat it home. Had a huge shopping trip to Sam's club, plus all the little things we bought during the week to distract us. Everywhere we went people were saying, well, this product won't be made anymore and this company is out of business, this is our last shipment from them, etc, so it felt like there was shopping that needed to be done while the products were still there.

Anyway, Thursday, the ct scan of the heart should have taken 10 minutes. We rested all morning and didn't even leave our room so we would get to the hospital in time and be all fasted and hydrated like they required. It was a nightmare ! ! ! Well, not a nightmare, but an infuriating and frustrating 3 HOURS . They couldn't find a good vein, so they finally got the nurse from the other morning and she put in the needle and showed them how to hold it down so that it wouldn't blow out when they put in the medicine, but they didn't pay attention to what she said. So they were putting all these meds and saline in me and not holding in the needle so it all pooled right under my skin.

so then, they got all freaked because the meds were supposed to slow my heart down, but my heart wasn't slowing down and they couldn't figure out why it wasn't slowing down until she went to put the contrast in and I said OUCH ! ! and she started looking under all the tape and finally figured out she had blown the vein. I'm so glad we noticed it before she put the iodine in. She said that is really painful if it doesn't go into the vein.

So they said what we'll do is put you on the oral beta-blocker for a few days and that will slow your heart down, (because we can't get it to go down thru the IV- which of course didn't go into the vein, so they don't know it didn't work). Anyway, we will have you come back in a few days and we'll TRY again. I just burst into tears. I said, you don't understand, we had to pay 300 d0llars just for the motel to stay and have this test today, I can't afford to just go home and come back in a few days, you just don't understand. Seriously, you DON"T UNDERSTAND, my husband works at the school and he doesn't get paid during spring break and next month is spring break and you just don't understand, I can't afford to just keep coming back so you can TRY .... cry, cry, cry.

They went and got the cardiologist and 3 other nurses. The doctor said we would try to find one more vein and if that didn't work, we would just forget the contrast part of the test, that basically we ALREADY HAD SEEN EVERYTHING THAT WE EXPECTED TO SEE. There is a tiny amount of plaque, maybe, in the bottom part of the heart. He said to keep taking my aspirin every day even though the surgeon told me to stop for 2 weeks before the surgery and to keep taking the beta blocker. that's it. He kept stressing that my heart is abnormal and there is a risk if I have surgery, but then he'd say, well, it's not that big of a risk, but there is a risk. I was just like: OKAY, I get it already. so the 3 nurses tried for probably another hour to find a vein, they poked every blue spot clear up to my arm pits (seriously) and then the tech came in and said, well, I can't use a vein in that part of the arm, they aren't big enough for the contrast. they just sent me home.

Mind you the day before, in the same vein, I had the same contrast put in for a different CT and they could have run me strait from that CT to this CT and used the same contrast, etc. but NO, they didn't do that.

So late Thursday afternoon we finally got to spend an hour in our favorite scrap book store, which we had been keeping for our treat for end of testing. She didn't have anything new in from the craft and hobby show in Anaheim. It will be in later, but we had a nice visit. It is a very tiny, personal store.

Then we got to spend 2 hours listening to our Relief Society general president from Salt Lake City. and we got to visit with our friend Amanda. We were so upset after the hospital mess that we almost didn't go and then at the same moment, the Spirit just said, GIRLS YOU HAVE TO GO. So we did and we got some good hope and some good encouragement.

Friday as we were driving home, we got phone calls from the surgeon and the cardiologist. The surgeon said, "I don't care what the cardiologist said. Stop taking the aspirin 2 weeks before the surgery."

And the cardiologist said, "What do you mean you are going ahead with the surgery, even though you have this tiny defect in your heart?" And he wanted to know why I had left so early the day before, he had wanted to talk with me again to set up our game plan. I was there for 3 hours, he couldn't have mentioned the game plan somewhere in the 3 hours???

So I said, Doctor, the risks from having the cancer are more of a concern - if you saw the cancer, I'm sure you would agree. Have you seen my cancer? He said no he hadn't but he guessed if I was sure that I needed the cancer surgery right away, he would go ahead and write up his report based on the fact that I was going to have surgery in 2 weeks. As long as I realized there was a risk ( and believe it or not that last paragraph is a direct quote).

So I spent a week and thousands of dollars of state and personal money to go to a specialist that nobody is going to listen to. Silly Silly people.

Alicia caught a bug - seems like a cold - this week. Justin says it is from hanging out in the hospital all week, probably true. Anyway, we are home and we feel good about the condition of my heart. Considering my age and weight (which apparently according to everyone we met at the heart institute is too much) and that I have had lupus for 40 years, I am very relieved that all they found was a teeny tiny bit of plaque in one teeny tiny area of my heart when it was stressed. When it is resting, the heart is perfectly normal.

Thanks for all your prayers. I know they worked. We could feel them. I was much more worried about this week of heart tests than I am about the surgery. I just have faith that there won't be the amount of cancer they think there is. I think we found it before it turned to cancer and the surgery in the end will just be a routine hysterectomy.

Barbara Gulley - I got your beautiful card this morning. THANK YOU. It lit up my day.

Have a good week and welcome to MARCH - I think we have made it thru another winter, almost. Love, Charlotte

Wednesday, February 25, 2009

Day 7,099,548

Also known as Day 2.

We did the resting nuclear test today and met with the cardiologist. He started by announcing in a dramatic ominous voice that my heart test was abnormal. So we're sitting there waiting to find out when they will put me on the heart/ lung transplant list and he shows us the pictures --- during part of the stress test, there is a tiny spot at the very bottom of my heart that might not be getting as much blood as the rest of the heart. It may have been that they just couldn't get a good picture of that spot because of my size. How will we treat it??? aspirin daily (which I have been on since 1968, seriously ! ! ) and a beta blocker added to my other blood pressure medicines.

Couldn't he have led with that?? instead of sitting there for 15 minutes like my heart was gonna give out right there in his exam room. Cardiologists and neuro guys are the worst. They are so doom and gloom.

Anyway, he wants to get one more test -they keep saying that - just one more kind of test, one more set of pictures, one more blood draw. Anyway, today I had a ct scan of my abdomen with iodine contrast and barium and tomorrow i have a ct scan of my heart with just the iodine. It is all really hard on the kidneys especially since I am diabetic so I'm supposed to be drinking and flushing and drinking more and more (water type liquids, nothing heavier, hehehe). So I have another day of fasting and lots of drinking water all this night and all tomorrow and tomorrow night.

We checked out of the Marriott this morning - the state paid for us to stay 2 nights for free and then we found a really good rate on a comfort Inn down by the port. It is Fur Rhondy weekend and a lot of the activities are down around the comfort inn. so we checked into it after I had been at the hospital for 6 hours today and it was filthy and moldy and smelled bad and had water damage all over the ceiling and some kind of picture that some tenant had created on the wall paper apparently with some kind of body fluids. It only shows when the light comes in the window in the afternoon. So we decided we were just gonna take a loss on tonights stay and we were able to cancel tomorrow nights stay there.

Then as we were trying to leave they had the operations manager come out and try to get us to stay in a better room and then they had the main manager of the company up here come out and try to get us to stay. She said our rooms just aren't like that - they are usually really nice. Let me find you a room that is up to our standards. So she took Alicia to see another room and it was just as filthy and beat up and Alicia said, It has mold just like the other one and the lady said where and Alicia showed her where it was and she said, ewwww this is icky. Oh my, I'll take care of checking you out. sorry

I know, we are pansies. But I just needed a place where I could chill for an evening and drink my water and feel safe and clean, so we are back at the Marriott. We did go online and get a better rate than Marriott said it would be so that saved us some money.

Yesterday, we spent a couple hours at the Providence Cancer Center which is proudly sponsored by Conoco Phillips and BP oil. (its in giant letters on every floor of the medical center). Anyway,, I said, I have to just step inside here and get a picture in my head so that if I have cancer and have to come in here, I will be okay because I know what it looks like.

Well, it was fabulous. Chairs and sofas and a gas fireplace arranged into all these seating combinations, computers to use whenever you want, private meditation rooms, and craft rooms and really private rooms called rabbit dens where you can go between appointments and eat or watch tv or sleep. And they are what they call a "navigation team" and I have a navigator and she will help me get thru all of this.

Alicia looked like a deer in the headlights the whole time we were in there. Jan and I were both trying to address her needs as well as mine and Jan kept trying to pat her knee and comfort her and she wanted nothing to do with it. It would have been funny if it wasn't about something so serious. I wanted to go back there today between appointments to rest, but Alicia wouldn't even go on that floor of the hospital (and when we did have to go on that floor, she kept her head turned the whole time so that she couldn't see the beautiful entrance doors), We could have stayed tonight in the cancer housing - the services are mostly free, but the housing isn't free, but it is very affordable. But she isn't up to that yet. Baby steps for everybody.

I was very comfortable in the cancer center and found it a place I know I will find comfort in when I need it (and they gave me a teddy Bear and a beautiful suede journal and all kinds of information and stuff.

So everything looks pretty good. Thanks for your continued prayers. Love, Charlotte

Tuesday, February 24, 2009

Heart Test

Just wanted to post a quick note to say that Mom's heart test went fine today. She did the chemical/nuclear stress test. Everything went fine though. Tomorrow is the second half, but its just imaging, today was the "scary" part. So, all that is fine. Will post again later. :) Love Alicia

Monday, February 23, 2009

So Far, So Good

We had a beautiful drive up to Anchorage today. The skies were blue and clear and the mountains were just breath taking. spring is definitely on its way to Anchorage. I always forget when I come here in the spring how much farther along they are than we are. In the winter the farther north you go - the colder it is, but in the spring it is the opposite.

I'm glad I don't live on the Kenai River. The North end of the River and the lake it feeds from are melted and the river is flowing pretty good. At Soldotna and Kenai the ice hasn't even begun to glimmer yet. When the free flowing part hits the frozen solid part in a few days, the people along the river better be sure their stuff is on high ground.

We splurged on some books and magazines at Barnes and Nobles. It is one of our favorite splurges and we hadn't been the last 3 times we had come to Anchorage. Tonight after our dinner we decided that would be our treat for the day. I got the Brothers Karamazov - I finished War and Peace in 4 days and haven't read Anna Karrina yet, but I heard that in the end she gets run over by the train, so that doesn't sound very uplifting. And I got some craft books.

I was going to get some other classics and I was like, this is dumb. I can check these out at any public library - especially our public library which is a very very fine library indeed. I almost picked up a Heminway set, but then I read a couple pages and I instantly remembered reading them in High School and how hard they were on me and how I've always said I thought the Bell was tolling for Me. Again, not very uplifting reading for scary hospital distractions.

We will post as soon as we can after the heart test on Tuesday. thanks for keeping us in your prayers. And HAPPY 96th birthday to my dear Grandma. Love, Charlotte

Cancer Stinks

I know there are some of you that would have liked for me to call and talk to you about my big cancer scare and I know that the laws of family and society would have been better served if I had said something but I hope you will forgive me that I haven't.

There are some people I just can't talk to about this because if I do, it will make the scare and the cancer so REAL that I won't be able to function. I love you all so much and you are all so far away and if I don't talk to you about this, then maybe it is all a mistake or it is someone else's life or something. I just can't face yet having cancer interface in every area of my life.

I had a couple friends call to talk about it after they heard it at church and after the first couple calls, I was like, OKAY , I don't want to talk about cancer anymore. This isn't fun.

I don't mean to leave you out and I don't mean to deny you the blessings you would get by helping me - I just need to be an ostrich for a few more weeks. Every day that I have to get my blood drawn or some stupid scans or pictures taken or something - the beast raises its ugly head in my face and says - HEY CHARLOTTE _ YOU ARE SICKER THAN YOU USED TO BE. and I deal with it for a few minutes or a day and freak out and then I'm able to put it out of the front of my face for a while.

I love you guys and know that you love me. Thanks for the prayers and any of you that can, please put Alicia and Brian and I on the temple prayer rolls. Thanks. Love, Charlotte

Thursday, February 19, 2009

our schedule for the next month

I have debated back and forth about posting all this, but I've decided to put some of it up.

We pretty much have a doctor or lab appointment or prep-work everyday, it seems.

On Tuesday we go to Anchorage for a nuclear heart scan, the stress test on Tuesday and the resting part on Wednesday, followed immediately by the visit to the cardiologist on whom we are all waiting to see if my heart can take any of these surgeries. Right after we are done at the cardiologist, we run upstairs and have the abdominal ct scan with contrast.

So the surgery is tentative set for March 18th, pre-op in Anchorage on the 17th. It can't be laproscopic .

Anyway, we are very blessed to have full medical coverage to pay for all of this, they would fly us up and back for our medical appointments, but then we wouldn't have a car to drive around in and couldn't shop to distract ourselves. I might fly up and back for the actual surgery since the road is really bumpy this time of year with the frost heaves and such. It is during spring break so Alicia can't come - they run the tubing hill full time that week - and Brian might not be able to come because he has a bunch of welding that he had lined up for spring break. Plus, trying to rent a motel room during spring break is really hard.

After losing 4 close friends (3 of them my age and one younger) to cancer this past year (lost another one last week) I'm scared, but being scared is what led me to get the first biopsy after Jackie died just about exactly a year ago.

Earlene and her family are having a fast day for us on Sunday, Feb. 22nd. If you would like to join in, we could use your prayers. Thanks. Love, Char

Tuesday, February 10, 2009

Westminster Kennel Show

We always watch the Westminster and the Eukanuba dog shows. We saw this little dog last night that had a tiara and some pink bows on her ears, so we decided tonight, to get our girls ready for the show by putting bows on their ears. We have some quick pictures to post later that Alicia very quickly took of the dogs with their bows.

then before bed we were trying to show Brian what they looked like and we found a new way to tie the ribbon on so that it stayed on the ears pretty good and only had to be tied on the top, instead of around each ear. So we tried it on both of them and they wriggled out and then we got it onto Mya's head pretty good and Anna went up to her, and studied the ribbon and grabbed the end and untied it and then dropped it on the ground and rubbed noses with her. It was a very sisterly thing to do. We'll try to get the pics up soon. It was really funny.

I guess you can't take the country out of the country dog. We just aren't New York kind of folk.

Sunday, February 01, 2009

Much ado about nothing

Today was the first clear day we have had in weeks and we had an excellent view of Mount Redoubt all the way home from church. It wasn't even poufing. At least Illiamna was venting out the side with a big puff of steam, but Redoubt just sat there looking like it always does.

The reports say that the earthquakes started up again this morning after quieting down on Friday night and that there is more melting and a bigger vent in the top of the mountain that is supposedly venting steam, but we couldn't see any sign of any action at all.

So, I'll guess we'll just sit around and wait and do something besides hit the refresh button on the avo sight (alaska volcano observatory).

The sunshine is beautiful. I wish we had had a camera in the car. It is one of the prettiest days we have had this winter.

Check the avo sight and there are some photos from the overflight yesterday that show the hole in the mountain top that the steam is coming out. I tried to put it on here, but failed, I'll try again later.