Sunday, August 31, 2008

Happy birthday to me


Blowing out candles (we didn't have 32 candles, so I just pretended I was actually turning 5). I'm also wearing my favorite pink butterfly scarf and some really cute earrings given to me by my sister-in-law. Probably can't see them in this picture, though.


Hello 32! I hope this year is a little less eventful than this last year...


I had a nice day. My sister made me blueberry pancakes this morning, the boys all helped to make a "Happy Birthday, Mom" banner, and we were on time for church!


My main present I already got this week, basically a present to myself. I got a new Canon camera. Not the 5D I've been wanting, but another point-and-shoot, just an inexpensive one. I can't find my other one I've had for the last few years, and it was time to upgrade anyway. This one is 8MP and has a nice video function. Much easier to carry around when I just want casual shots, than my big 20D.


Naomi took the boys to the Dollar store yesterday and the boys picked out their own presents for me. I got a picture frame with a drawing of a birthday cake in it (Mosey's idea, he even looked up pictures of cakes on the computer to find one he liked, and then Naomi helped him) from Mosey, and then 2 more frames for the other boys to put some of their artwork. Mosey also gave me some new jewels for my cane. He was so cute, he was SO excited for me to open presents. He'd been asking all day when it would be time. Joseph also gave me some lemon-lime scented dish soap (my favorite scent, which he remembered from when I was griping in Target about how they didn't have any lemon-lime dish soap! Wow, he really listens sometimes!). Brigham gave me some new craft scissors (we have a scissors black-hole somewhere in our house and scissors just disappear), and then all of them got me a bottle of Cranberry juice, my favorite. So sweet, huh?


Then we had cake (leftover from the boys last week) and a rousing, if not quite musical, rendition of "Happy Birthday."


We went on a walk around the neighborhood (well, everyone else walked and Ben pushed me), and that was nice too. Joseph was quite sure he didn't need his shoes, and then ended up stepping in a fire ant pile. Oops. So he sat on my lap all the way home. Brigham wanted to ride, too, and offered Joseph his shoes, but Joseph was not too interested in giving up his seat.


So it was a nice day, and now I'm an hour late for bed!


I hope everyone has a nice Labor Day tomorrow.

Saturday, August 30, 2008

Last day of 31

Ben took me out to Cheesecake Factory this afternoon to celebrate my last day of 31. Or maybe it was to celebrate my birthday. Either way, it was delicious!
He gave me a wonderful birthday present of fixing several problems I was having with my computer, and I finally have my system back where I want it, after having to reformat the hard drive and all the headache that comes with that. (Why is it that the restore CD doesn't actually *restore* your computer to how it was when you got it?!)

The boys are really enjoying Naomi being here. She is so fun, way more fun than I am. She took them to Blockbuster yesterday afternoon to let them pick out their weekend movies (we have a no TV except on weekends rule around here), then to the dollar store this afternoon, she plays games with Mosey during our homeschool lessons, and otherwise takes care of things around here.

Joseph got "The Haunted Mansion" for his movie, the Disney movie that came out last year I think. All the boys piled onto my bed to watch it, and requested that I join them. It was a little bit scary in some parts, but didn't seem to phase (faze?) my boys too much. At least, no nightmares about zombies last night. I think they were a little scared, though, because usually they don't specially ask me to come and watch a movie with them.

In my next post I'm going to detail some things about my boys that they have been doing recently, before I forget. But tonight it's too late and I'm too tired. Sorry for this very disjointed post!

I'm also going to take a picture of myself (well, have someone else take a picture of me) every day in one of my hats/scarves that my friend Stephanie gave me. They're so cute, but once my hair finally grows back in, I probably won't wear them too much. So picture #1 is today!

Tuesday, August 26, 2008

How to live in the moment?

Ok, two posts in one day. I just wanted to give the first day of school its own post.
So I'm finding myself struggling with fear the past few days. I kind of anticipated this might happen. Now that the transplant is over and there is nothing left for me to "do," my mind gets away with me. Maybe it's a little like what cancer patients in remission feel whenever they go back to the doctor to get scanned. What if the transplant doesn't work? What if the next MRI or the one after that show my MS lesions growing? What if, after all of this, I have to face the prospect of life with progressive MS anyway?
All of these are very real questions that I can't simply blow off. I know that, according to the other studies that have been done, I generally fit the profile of someone who will be successful in the transplant, but that is far from an absolute. It is very possible that my MS will simply come right back.
I know the answer to these fears. First of all, faith. It's hard for me to have total faith that the transplant will work. That's a failing on my part, I guess, but at my heart, I'm a realist (fatalist?). I know there are people with all the faith in the world, who still find their deepest desires unfulfilled. I've had priesthood blessings, but it is always easy to say that the words of reassurance don't necessarily mean the transplant will work, but that everything will be ok even if it doesn't.
That's where I know I need to place my faith-- that whatever happens, it will be ok. It may not be what I want, but with faith I can move forward into the unknown and know that one way or another, it will be ok.
I wish I believed more in destiny. I wish I could tell myself that no matter what happens, it is what was "meant to be," and that God had planned it to be that way all along. And it may be so, I certainly think that God does act in that way at least sometimes. I'm just not sure that every bad thing that happens is necessarily God making it happen. I tend to think that God lets life happen to us, but is there to help us through it whenever we ask. I guess in that way, everything that happens is a part of God's overarching plan, I just don't think he necessarily plans the specifics for us all the time. I think he does sometimes, just not all the time. And I don't know if my life story is something he's specifically planning out for me or not.
But I can have faith that God will help me, no matter what happens. That he will provide a way for me to be content and happy, if I look for it. He will provide a way for my boys to be compensated in other ways for the disabilities of their mother, if Ben and I help them to find those ways.
I know those things, but it's still hard in those quiet moment when my mind starts going to the "What if?" place.
I think a more immediate answer for me is to learn to really live in the moment. If my MS does come back, I better be appreciating every day that I can walk. I better appreciate and take advantage of everything I CAN do with my boys. I better try to do things now that I may not be able to do in the future (DisneyWorld, anyone?). I need to take joy in the present, not necessarily in things that may happen in the future, which is how I live too much of the time. I tend to live my life planning for things in the future, and not enjoying today enough. Did I really absorb every moment of my precious children's delightfulness today? I need to let those moments make me happy and forget about worrying or fearing the future. Worry or fear will not change anything except how I feel today.
So that is my task, now that the transplant is over. To acknowledge the reality of my worries and fears, and then set them aside. To decide that I will enjoy what today has to offer and let that give me satisfaction, instead of always thinking about what I may not be able to do next year or in five years.
I have all the answers, huh? Ha, ha, ha. So why is it so hard to internalize them? Any practical advice anyone may have for me is appreciated.
I'm sorry to sound so down, I'm not really. I guess the realist in me wants to kind of brace myself for a bad outcome, so if it happens it won't be such a blow. But that's not making my days any brighter! Is that a stupid life strategy? Is it better to expect the best and then deal with disappointment when it comes? And if that is better, how to I switch from the former to the latter?
Hmmm, maybe what I need is a good psychotherapist!
Thanks for listening.

First day of school

So this is the first year I don't have a picture of my kids on the first day of school! What is the matter with me??
I made the plunge and decided to go for home schooling. I wrote up a letter of intent and Naomi delivered it to the school office today (I'm a little chicken, but I really would have done it except I was busy with lessons!).
I think it went pretty well for the first day. Our subjects each day are:
Math
Reading
Spelling
Language
Writing
Handwriting
Each week we will also have lessons in Science, History, and Art. Two lessons each in science and history, and one structured art project each week.
I started with science today because the boys love science and love experiments. We had a lesson on density, and then compared the density of various objects/substances to water. Who knew that hand sanitizer floats? Or that milk sinks?
Then we had math, the tail end of which we had a little trouble with Joseph. Naomi would probably say big trouble with Joseph.
I had to take Mosey to the doctor (I drove! Hurray!) for his preschool checkup, and made the mistake of leaving instructions with Naomi to make him sit at the table until he finished his last problem.
Long story short, he was still in the midst of the biggest tantrum I've ever seen him in when I got home an hour and a half later. Good thing Naomi's already pregnant or she might have decided then and there never to have children!
We got the situation solved, though, and I have some good ideas of how to avoid/defuse a situation like this next time. And Joseph and I had a good talk about home schooling and expectations, and all that.
And he was good as gold for the rest of our lessons, he couldn't have been better. So I am hopeful.
I wanted Mosey to join in our lessons, too, and he did participate in our experiment, but other than that he wasn't too interested. Too bad, because he's totally smart enough to start on lessons himself. But I won't push him, he is only four. It's probably a good thing two days a week he'll have preschool during the boys' lessons. And I'll make sure to do special Mosey and Mom activities every day after lessons.
So that's the report. Overall, I'm pretty pleased at what we accomplished, and I expect things will get a lot better over time.

Monday, August 25, 2008

Kapla Blocks!

I ordered some more Kapla blocks for the boys' birthday, but they didn't come until today. I've sung the praises of Kapla blocks before, so I won't reiterate it here, but they are still probably the favorite toy of my boys, even 8 months after we got the first set. So now we have 300 Kapla blocks! Hope that holds 'em for a while.


This was Brigham's first creation with his newly expanded Kapla block arsenal. And Mosey had to get in the picture to show us his tongue, too.



And I caught this shot mid-collapse. It's good Brigham doesn't get too attached to his creations.



Earlier in the day we went to Michaels to let the boys spend some of their nickels (we do nickel jars that they get to fill with nickels they earn from chores). One of the things Joseph got was this paintable picture frame. He hasn't painted the frame yet, but he spent all afternoon working hard on a painting that he was then thrilled to put into the frame. I am hoping to put a whole bunch of the boys' artwork on the walls of the 2nd bedroom upstairs (the one nobody sleeps in because my boys still insist on all sleeping in the same room, often all on the same double bed!).



And not to be outdone by Brigham, Joseph also made a Kapla block city, using all 300 blocks! So this was his afternoon of industriousness.

By the way, I've been feeling really well the past few days. I haven't thrown up since Wednesday night! I actually feel like I may just be past this part of the recovery process. I've been able to be up and about most of the day which gives me confidence that I just might be able to do this motherhood thing again once all my sisters have come and gone.

Saturday, August 23, 2008

Birthday in Pictures

Friday morning found the boys up early (what's new?), but more unusually, their mother up early, too! Rosalynde made pancakes and I made strawberry sauce (from some frozen strawberries leftover from our strawberry-picking expedition some months back). We found an old but not-too-dessicated-mostly-gone container of cool whip in the back of the refrigerator (actually, Joseph remembered seeing it, you know, one of those important facts that gets stored in the back of a little boy's mind), so breakfast was complete!

Brigham holding up the timer showing the EXACT moment of his birth, seven years ago.



Joseph pretty much hates getting his picture taken, and had his hand up covering his face for most of the time I was trying to snap pictures, but I did manage to get this one of my cutie. See his teeth growing in?!

After breakfast, we headed out to the airport to pick up Naomi! The boys were very excited to see her, she has been the aunt they have seen the most since she comes to rescue me on a regular basis. She had been up since 1:00 in the morning traveling up to Baltimore, so when we got home, she headed upstairs for a nap and the boys and I decorated their cakes.

The boys were good all afternoon, allowing all three moms (or moms-to-be as the case may be) to take naps. Good boys!



After a day of playing, we met Ben at Texas Land and Cattle (local restaurant) for an early dinner. I got a few more pictures in front of the restaurant while waiting for Ben (he had to make one final Target run for presents). Joseph mostly cooperated, because I told him birthday pictures were REQUIRED, and he got to choose the time and location. Mosey wanted to get in at least one of the pictures (why do I have one son who hates pictures so much, and one who can't wait to be in any and all of them?).



I so wanted a shot of Joseph and Brigham hugging each other, but this was the best I got. Brigham has actually *almost* caught up with Joseph in height, they are only 1/4 inch apart, and 1/2 lb apart in weight. And hasn't Brigham's hair gotten light this summer?


In this shot, I really wanted their arms around each other's backs, but that was just not gonna happen. I still like it, though.

At the restaurant we feasted on all kinds of yummy Texan fare, plus the boys each got to pick a free dessert. And it wasn't one of the puny brownie-and-ice-cream free desserts, but one of their $6.95 desserts from the dessert menu! Joseph chose cheesecake with caramel sauce, and Brigham chose bread pudding with peaches and ice cream. And each boy just about finished the dessert, too, I was amazed.



After the restaurant, Ben took the boys to Blockbuster to choose some movies for the weekend, and then it was PRESENT TIME! Mosey had thought that one of the gift bags up on top of the shelves in my room was for him (and honestly, I thought it was for him, too), but it turned out to be a present for *my* birthday next week! So he was pretty disappointed. But Mosey is an enterprising little boy, and ran out to get his Blockbuster movie and asked me to wrap it up for him. He said, "I don't mind if I know what it is, Mom." So, there you see his Teletubbies movie wrapped up in leftover Christmas wrapping paper.



And after the big haul! They got:
Joseph: Shoes, shirt, shorts, and $10 from Grandma Jackee and Grandpa Kent; "Where the Sidewalk Ends" book and CD from mom; Legos airplane set from dad; Dominos set from Rosalynde.
Brigham: Shoes, shirt, shorts, and $10 from Grandma Jackee and Grandpa Kent; Science experiment book from mom; Legos airplane set from dad (different from Joseph's); Rubik's cube from Rosalynde.
Both: Paper airplane book from Grandma and Grandpa Frandsen; Jenga blocks from dad; Indiana Jones Mr. Potato Head from Logan (school friend)

So, yeah, maybe a little over-the-top, but hey, a boy only turns seven ONCE in his life! Mosey was so excited (despite not one of the presents being for him), that he exclaimed at the end of the evening, "This was better than CHRISTMAS!!" What a good sport he is! Either that or he has designs on some of his brothers' presents...

The boys immediately got out most of the toys and we had a giant play session for an hour or so before birthday cake time.



Joseph requested a UFO birthday cake this year, and even illustrated instructions for it's design. Rosalynde made the cakes and frosting, and the boys had fun watching and helping me decorate them. I am NOT any kind of a pastry chef (Christine, I know you are just cringing looking at these!), but it was fun anyway.


Another view where you get a better feel for the silver platter that was supposed to add to the UFO/flying saucer effect.



Brigham requested a Castle cake, and after consulting a few Google Images of castle cakes, we came up with this design. The m&m's stuck into the sides are supposed to be stained-glass windows, and the candles on top of the towers are supposed to be banners.


Another view of this, um, fantastic cake! (It really did taste fantastic, though).



Joseph and Brigham contemplating their cakes after dad lit the candles. They look pretty happy about them, huh? And that's what counts.



Blowing out the candles! Joseph's candles were all bunched up and he got his blown out in one breath; Brigham's were all spread out and it took him a few gusts. All the more birthday wishes for him!

And that was our day! The boys weren't too hungry for birthday cake after the dessert at the restaurant, but Brigham especially put in a very respectable effort. And now we'll have birthday cake for the next three months; if anyone wants to help us out with that, we'd be grateful!

To Vicki Bozzola

Hi Vicki,
My mom and I saw your comment below, and she was so thrilled to see your name! She would absolutely love to get in touch with you. Would you mind emailing me (gfturner@gmail.com) with your contact information so I can pass it along to my mom?
Wow, the Internet sure makes this world a small one.
Thank you for your support, I sure appreciate it. :-)

Thursday, August 21, 2008

Tomorrow I have two seven year olds!


Joseph, just after birth



Brigham arrived just 5 minutes later


Seven years ago right now, I was in agony. It was 8:00 PM Utah time and I was just about ready to ask for my epidural. I had grand designs to wait until I was 6 centimeters, but when the contractions hit hard, I didn't last too long. I think I managed 2 or 3 hours of really intense contractions, and then I was done. I ended up with my epidural around 8:30, so this time of night was the worst of it.

I went in for my induction at noon on the 21st, and thought for sure I'd have them on the 21st! I thought it was a little unfortunate that they'd miss being born on their uncle Brigham's birthday by just one day, but at 38 weeks, I was ready! But, as sometimes happens, after 10+ weeks of bedrest, my body suddenly decided being pregnant with twins wasn't so bad after all! By the time the pitocin actually got started, it was later on in the afternoon, but even still it took quite a long time for any kind of contraction pattern to kick in.

Then, after my epidural (I found out I was only at 3 centimeters-- how embarrassing!!), naturally labor slowed down. I was able to sleep off and on during the night, and my doctor was extremely patient during my very long labor, never once even mentioning the possibility of needing a C-section.

Finally by around 7:00 the next morning I was complete and ready to get the babies into this world! Then Joseph (oh my goodness, I think it was Joseph! Maybe it was Brigham? I'll have to go back and look in my journal, but I think it was Joseph) started to have pretty severe heart decels with each contraction, and things got a little crazy. The doctors and nurses got their teams ready, I was wheeled into the OR just in case an emergency C-section was needed, and by 7:25 AM, after just three contractions, Joseph was born! It was the longest labor and the shortest pushing time, which was actually just fine with me. Joseph didn't make much sound when he was born, and I was worried, but my mom and Ben were there and could see that he was pink and healthy.

Brigham was a stinker and, although he was transverse in the womb, laying across the top of Joseph, after Joseph got out of the way, he decided to flip feet down instead of head down like a cooperative little baby would have done! But the doctor wasn't fazed (I loved this doctor), and just pulled him out by his little feet, and at 7:30 AM, both of my boys were finally here!

Brigham cried a little more than Joseph, but both boys were very quiet. In fact, Joseph just had this tiny little mewing cry, like a little kitten, for a few days. Brigham would kind of mewl back to him when they were lying next to each other in the hospital bassinet, it was so cute.

After they were born and I cuddled them for a minute, they were taken back to the nursery to be checked out, and I got wheeled back to my L&D room to finally eat something. I hadn't eaten anything since early the morning before, and that was just a little bit (toast I think) because I was so nervous, so I was starved! I had a big breakfast of pancakes and other good stuff, which almost immediately I threw up. Notice a pattern in my life? :-)

But the boys were brought into the room and passed around amongst my mom, Ben's mom, Rosalynde, Naomi, and of course Ben and I. I spent the morning examining them to make sure I could identify which twin was which. They didn't look that much alike, once I got to looking at them closely.

We had a good hospital stay. The nurses looked after the boys at night so I could sleep, bringing them in just for nursing, and then during the days I had plenty of family visiting so I could get some rest before coming home. It really was a pretty idyllic twin labor and delivery.

I was sooooo happy to have those two little babies. They were a long-time coming for us. Lots of time and tears and money, but it was all worth it when they were finally here, safe and sound.

Now they are going to be seven years old! I still look at them and marvel that they are here and they are really my sons. The responsibility still is pretty overwhelming. But they give me joy every day and considering everything else that has transpired in my life since then, I am unbelievably grateful that they are here. I am profoundly grateful for the medical technology that enabled these two people to come into existence, for my husband who so patiently (though I'm sure sometimes with bafflement) went along with my single-minded quest to have a baby (or two).

At the time, I know many people (including myself sometimes) thought we should just be patient, not go crazy and go into so much debt and do more extreme treatments when we were both still so young, with so many child-bearing years (so we thought) ahead of us. But I had this insatiable drive to continue on our path, and our families and friends were supportive, even if confused at times.

Now, of course, I look back and realize that if we had not gone through with our IVF cycles and finally had success with Brigham and Joseph, my family would certainly not look like it looks today. We would have Mosey, and that would be it. Mosey would not have his brothers, I would not have a houseful of running feet, little boys voices yelling after each other, three little people to share their childhood and be the light of my life.

So tonight, I am very grateful. There are many things in my life I probably would not have chosen, but I couldn't have chosen more perfectly the children that I have.

God has blessed me beyond reason. I can't question why he has blessed me with my children when there are so many other couples still desperately waiting. All I know is that I am so lucky and I just hope I can fulfill my end of my bargain with God. He's lent me these little guys for a while here on Earth, and I promise to get them back to him at least not too much the worse for wear!

So, on the eve of your seventh birthday, Joseph and Brigham, I love you more than I can even describe to myself.

Love,
Mom

Tuesday, August 19, 2008

One week home

Well, I've been home just over a week now! I wish I could say it feels like I never left, but not really. I don't feel like I felt when I left, I guess is why.
It was fantastic to see the boys last Monday night after I got home. Mosey gave me the best response, he was very excited. The other two boys were still mostly interested in my bald head! Ha ha ha.
I didn't have to twist the truth too much to get permission to go home. We checked out of the hotel Monday morning so I knew we were going to be leaving, no matter what. I still hadn't kicked the throwing up (guess it wasn't the potassium after all), but at that point I sort of figured out it had to do with too much activity. The hugely strenuous task of taking a bath made me throw up every single time, I realized! Nothing I did or the doctors did made any difference with my throwing up, so why shouldn't I just go home and throw up rather than stick around Houston at $129 a night throwing up?
Anyway, when the nurses asked me if I was feeling better I basically said, "I think I'm feeling normal now." And I guess throwing up every day is normal now! When I told Dr. Popat I had a doctor's appointment on Wednesday when I got home, and he realized he knew the doctor, I guess he felt comfortable to let me go.
Tuesday, my mom got the house all in order, unpacked my stuff, did laundry, cleaned out the car, and otherwise was a tornado of productive activity. She had to leave Wednesday morning to go back to CA. I wished I could have had a couple of good days before she left, but Tuesday wasn't a good day for me, throwing up-wise. And it got worse over the next few days. Joseph got sick with a stomach bug, too, and it is possible I picked up that bug, although I was throwing up a lot before he started, and I was pretty careful about wearing my mask and keeping my hands washed. Who knows. After two days of not being able to keep anything down, I called my doctor and she prescribed me dexamethasone. The pharmacist was worried about giving it to Ben when he went to pick it up, because it is also an immune suppressant, but at that point it was more important to get me able to keep my medications down (to keep anything down).
That medicine made a huge difference and by Saturday I felt like a different person.
I had a great weekend, went to church on Sunday, ate three meals like a normal person, and felt some hope for the future!
Yesterday I had to go into the hospital to get blood drawn, so my sister took the kids down to the cafeteria for smoothies while I went up to the lab. Before we left the hospital, I got a call from Dr. Kalidas telling me my hemoglobin was down to 6.6 (this is very bad) and I had to get a blood transfusion. But since I'm a transplant patient, they had to type and cross my blood (looking f0r antibodies against blood since I've received transfusions before), and get the blood cells irradiated. So I had to hang out at the hospital a few more hours for that, and then back at the hospital this morning at 8:30.
I had to get 3 units of blood, at 2 hours a piece, so I was at the hospital till 3:00 PM! Long day. It was made a little more exciting by the girl in the chair next to me who reacted to her blood, or had a seizure or something, anyway there was a lot of activity and emergency phone calls and oxygen and all sorts of stuff. She's ok, so all's well that ends well, but I felt really bad for her. I remember reacting to the ATG at MD Anderson and it is a very scary experience. And she couldn't speak much English which I'm sure made it even more frightening for her. But the nurses in the infusion room were really nice and I read my book and watched some Olympics and then some cooking shows, so it was ok.
I'm feeling ok today, not as good as over the weekend though. Threw up again on the way to the hospital, so my no throwing up streak is up for now. I'm hoping it had something to do with my flagging hemoglobin levels and that I'll perk up again now that I've got some blood back in my system.
The really good news was that my blood pressure was somewhat normal (for me) at 97/59 or thereabouts during all my vitals checks during the transfusion, but even better, my pulse was down to 88, 80, even 79 one time!! Hurray!! Looks like my tachycardia has resolved, which honestly has been bugging me.
So that's the news around here. My sister got here last Thursday night, just in time for my really horrible Friday. She's taken things well in hand, though, and I'm so grateful. Her little girl Mara is here, too (2 years old) and is having fun with her cousins. Rosalynde's older two kids are at a cousins get-together at their other grandparents, so she was "free" to come and be house-slave here for a while. She's a really good cook, so we're lucky!
I've been reading "Indian in the Cupboard" to the boys, we're about halfway through now. They're enjoying it, especially since I can't find their math books, so they've been off the hook with math assignments!
School starts next Tuesday, so we're at crunch time deciding whether or not to homeschool. Both boys want to, and I want to, I'm just worried about my strength. So I'm continuing to pray about it and see how it goes. It would be good not to have the exposure to all the school germs, but homeschooling is a much bigger decision than that, and in any case, Mosey will be going to preschool twice a week, so some germs will be coming home no matter what we do.
I'll have to find the math books before we can start, that's for sure!
Ok, that's it for today.

Sunday, August 10, 2008

Hangin' in there


Here is my pharmacy of medication I have to take. Several of these are twice a day or three times a day medications. Fun stuff.




A typical dose of pills. I take them morning, noon, and night. My main problem with being sick is not being able to keep the medications down. I always have this debate in my head-- "Has it been long enough for the pills to have absorbed? Do I take them again? Wait until the next dose?"




Well, the sickness doesn't seem to have left completely, despite stopping some of my pills, so I think I just have to accept that this might be a continuing problem for a little longer as I recover. Honestly, I'm getting a little used to it. I haven't thrown up since yesterday morning, though, so maybe I'm out of it now. Of course every time I think that, I end up getting sick again, so we'll see.

Friday we had a nice day. We went to see the only intact Byzantine frescoes in the Western hemisphere. We thought they were in this one building, which ended up being a gallery for some artist, Cy something or other. It was interesting, but he's definitely one of those artists that make me go, "Huh?" Giant chalkboards with chalk scribbles, flowers dipped in plaster, giant wall-sized murals with color splotches. I don't get it. I wish there would have been some explanatory notes or something to go along with each piece so I could at least try to "get it."

Anyway, we finally did find the frescoes and they were beautiful and interesting. After we stopped at a toy store so I could get some presents for my boys.

I wasn't feeling too good when we got back, maybe too much activity, and that triggered more throwing up. Grrr.

So Saturday, after throwing up again in the morning, I did absolutely nothing. I seriously lay on the hotel bed ALL. DAY. LONG. Watched the Olympics, watched a movie with my mom on the laptop, read, and basically vegged out all day long. It did the trick, though, and I didn't throw up again.

Today was kind of more of the same. We did go downstairs to use our breakfast coupons, but then I've sat on the couch the rest of the day watching the Olympics and CNN (the only news program here at the hotel). Learned that the big famous arch at Arches National Park collapsed! Can you believe that? How weird. I read about 1/4 of the Houston Chronicle Sunday paper (can anyone actually read the whole thing in a day?).

So my news is very boring. Tomorrow I'm going back to see the doctor and I'm telling him I have to go home! I think he'll tell me I'm good to go, but even if he doesn't, I am just going home. I can't stand to be away any longer! I have an appointment with a hematologist/oncologist in Austin on Wednesday, so don't worry, I'm still going to be followed closely. I just need to get out of this place!

Friday, August 08, 2008

08:08 08/08/08 again

Ok, even though the time stamp on the previous email says 8:05, I assure you it really was 8:08! My computer clock was 8:08, and is normally sinked with the blogger time stamp. I even tried to repost at 8:11, just so it would match the time stamp, but then blogger decides to sink with my computer clock and it said 8:11! Grr.
It was still cool.

08:08 08/08/08

Only happens once! (well, I guess every time stamp only happens once, but this is a cool one!)
Happy Birthday Rosalynde!

more sick days

Well, after a good day on Wednesday, in the afternoon I got sick again. Boo.
My mom and I did go see the new Batman movie earlier in the day, though, so the day wasn't a total loss. It was really good, by the way. I hadn't really understood the big deal that was made of Heath Ledger's death, but after seeing the movie, I kind of do. He was brilliant, like academy-award winning brilliant. So go see it. Definitely not a movie I'd take younger kids to, that's for sure.
After the movie we also went on a walk around the beautiful University Village area just west of Rice. Well, my mom walked and I rode, but close enough. The weather was still nice after the storm the day before and I really enjoyed being outside. I'm getting so pasty-looking, you'd think is was February!
Yesterday I had my follow-up doctors appointments with Dr. Hutton and Dr. Popat. They went ok I guess. I was pretty sick yesterday morning, and I had to get a whole bunch of blood drawn (like 16 tubes). As the lady was drawing the blood (from my central line, thank goodness), I started really not feeling good. Finally I had to ask my mom for the plastic bag I had stashed in my purse for emergencies. Lovely.
There's got to be an even stronger social taboo against PDV (public display of vomiting) than there is for PDA, right? Oh well, I guess I was entirely inappropriate yesterday. Because a few hours later, as I was coming out of the MD Anderson diagnostic lab where I had to get MORE blood drawn, it happened again. At least most of the people there are probably used to throwing up since they're all cancer patients, or with cancer patients.
Well, after that we went to our favorite hang-out at MD Anderson, the family/patient room and canteen. This is a well-kept secret at MD Anderson because if people knew about it, it would be swamped. I didn't even know about it until one day when I was really sick, I asked one of the nurses if there was anywhere in the hospital where I could lie down. She didn't know but asked another nurse who *did* know and told us about this room. In the waiting room area they've got tables set up with puzzles and games, plus a basket of crafts you can do. In the back there's a snack bar of sorts, but then to the side there is a nice big room with couches and recliners and dimmed lamps, and the volunteers bring you pillows and blankets. Very nice. So I've spent several hours between appointments laying on one of the couches in there trying not to throw up.
I was feeling mildly better when I saw Dr. Popat. I hoped he would give me the all-clear to go home this weekend, but he's worried about the continued sickness. My counts are GREAT. White blood cell count 3.3, ANC 2.6. But he didn't want me going home until I've had several days in a row of not being sick. He did have a theory as to why I keep getting sick-- my Potassium supplements! Now, potassium supplements sound pretty harmless, right? But apparently they are pretty harsh on the system and frequently do cause nausea and vomiting. That's weird I think, aren't bananas and potatoes and other totally benign foods rich in potassium? Anyway, it makes sense because when I do get sick, I don't take the supplements, I only take the really essential medications. Then after a couple of days I'm feeling better, so I start taking all my pills again, and voila-- I'm sick again within a couple of days. I really hope that's it.
Anyway, he wanted me to come back next THURSDAY. I asked him if I could go home and then if I was still sick, come back to Houston on Thursday, but he wasn't keen on that idea. So he said I could come back Monday and we'd see. So I'm praying I am NOT sick between now and Monday so I can go home! I'm pretty disappointed, I really thought I was going to get to go home and see my family tomorrow. But, it was not to be. It's only a couple more days, we'll all survive.
When we got back to the hotel, Dr. Popat's nurse called and told me to stop the Diflucan as well, since that also causes nausea and vomiting. I'm not sure what he'll do about that medication, though, because I really do have to be on an anti-fungal for several months. Maybe there's another less harsh one.
So that's it. I felt pretty ok last night and even ate some oatmeal which stayed down! A miracle!
Rosalynde, I hope you are having a wonderful birthday. The August glut of birthdays has begun!

Tuesday, August 05, 2008

I'm here! Still here!

Yes, I am still alive and still here in Houston.
I was really sick the last couple of days, therefore no updates.
I had a really great weekend, going on a fun outing on Friday, and then a good day, although at the hospital, on Saturday. Then Sunday, for no discernible reason, I got sick again! So annoying and discouraging!
I'll give a brief update of the weekend first.
Friday my mom and I went to Ima Hogg's mansion at Buffalo Bend Bayou. It was really cool! Yes, her name really was Ima Hogg, and that was her given name, not her married name, since she never married. Her father named her after the heroine in a poem his brother wrote. When his father (Ima's grandfather) heard that he was going to name his granddaughter Ima, he immediately set out from wherever it was he lived (can't remember) to tell his son he could NOT name his daughter Ima. But it was too late, she had already been christened. Poor girl!
Anyway, she had an interesting life-- her father was the first Texas-born governor of Texas. He struck it rich in oil, and Ima always believed that inherited money is a public trust. She turned her home into a museum, with each room authentically furnished and decorated according to various periods in history. The museum is on a huge piece of land which she turned into beautiful gardens, staying true to native conditions. The gardens are absolutely beautiful! My mom got a workout pushing me along in the wheelchair on the dirt paths.
One funny story-- when we got there, we were asked to keep our purses and stuff in lockers off of the guest shop. I was attached to IV fluids at the time, carrying around this backpack with the IV pump and bag of saline. I had set my phone's alarm the day before to remind me to change the bag of fluid. Well, I changed it out before going to the museum, and totally forgot about the alarm. So right at 1 PM, my phone's alarm started going off inside my purse in the locker. The woman at the front desk was this sweet little old black lady with a walker. I'm sure she has probably never even touched a cell phone. So she hears this alarm and has no idea where it's coming from, and begins to get frightened. Was it an alarm on a bomb? She called in one of the maintenance guys as well as the security person at the front gate. They figured out it was a cell phone alarm and calmed the poor lady down. So when we come back, the cell phone is STILL alarming, and I was extremely embarrassed. At least that poor old lady will have a good story to tell!
After Ima Hogg's place, we drove out to the Houston Temple. It's a little bit of a drive, but beautiful, in a really beautiful residential area northwest of Houston. We drove around the neighborhood admiring the houses and speculating how much comparable houses would go for in Southern California!
We stopped by a Krogers which was having a grand reopening, and feasted on more samples than I've ever seen!
Saturday was a hospital/clinic day. I had to get a blood transfusion that afternoon, so we were there for a while. The whole system of getting blood products is extremely inefficient and frustrating at the hospital, I'm not sure why. I could revamp the system so it worked better for everyone! Too bad I'm not in charge.
Sunday morning I woke up not feeling too well. We got ready for church, and went to a meeting house not too far away. As soon as I got in the building, I knew I really wasn't feeling well. Luckily the restroom was right there and I was able to get to a toilet before I threw up (sorry, TMI). We just stayed for sacrament, and then went home. It was just as well, as the ward meeting at that time was a Spanish speaking ward.
So Sunday and Monday were sick days for me. I have no idea why this happens. I was feeling so good for 3 days, and then bam! Totally sick for 2 days. Couldn't even hold down water. Very annoying, because I can't hold down my medications. And it comes out of the blue, I can't figure out the cause.
Anyway, yesterday I thought for sure I'd have to be put back on IV fluids. But, the regular nurse-practitioner that I see (who is very cautious) wasn't there, and the other one I saw wasn't too worried. She said it could be the combination of medications I'm on that trigger the nausea, and as I slowly wean off some of the meds, it should get better. My blood counts went up after going down on Saturday. So I got off scot-free with no IV fluids, and no appointments until Thursday!! I was astonished.
So I had a bad night last night, but after taking benadryl and compazine last night, I woke up feeling much better. I hope I'm off the throw-up roller coaster, but I'm not holding my breath, either.
Today is Tropical Storm Edouard. The local news has been going crazy over this storm. All the newscasters have been praying it will turn into a hurricane, I can just tell. It's been all storm all the time talk. And it's turning out to be a whole lot of nothing. Lots of rain, but not THAT much, and not much wind, either. It's amusing to see the hysteria of the media, and then have the storm be such a dud. But we're staying indoors today anyway, mostly to see if I can get over this stomach stuff. I hope tomorrow I'll be doing well enough to be able to go on another outing somewhere. My poor mom I know is going absolutely stir-crazy!
So that's all the news for the past 5 days. Sorry so boring!