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.
Tuesday, August 26, 2008
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.
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.
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!
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. :-)
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.
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.
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!
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!
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!
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!
Thursday, July 31, 2008
Coming up for air
I've been absent the last couple of days because they've been a thoroughly ROTTEN couple of days! But I'm better now, no fears.
I started feeling nauseated Monday night, then Tuesday I was feeling horrible, and started throwing up that afternoon. I didn't really stop throwing up until late last night. I was so scared I was going to have to go back into the hospital, because I couldn't take my meds. But I begged the nurse practitioner not to re-admit me, and instead yesterday I got IV fluids in the hospital, and now I'm saddled with my favorite port-a-pump IV thingy.
I'm feeling way better today, though, which is such a relief. I think my entire GI tract just decided to go on strike. It reminded me how much I HATE THROWING UP!!!
My counts are doing ok, they were up yesterday, but down a little today. This whole process really is two steps forward, one step back. But I haven't been put on Neupogen shots, and the doctor seems fine with my numbers, so I guess all is progressing as it should.
I get a day off from the hospital tomorrow (don't have to go back till Saturday!) so we may actually go somewhere besides the hospital and the hotel! Yeah, are we crazy or what?!
That's it for today!
I started feeling nauseated Monday night, then Tuesday I was feeling horrible, and started throwing up that afternoon. I didn't really stop throwing up until late last night. I was so scared I was going to have to go back into the hospital, because I couldn't take my meds. But I begged the nurse practitioner not to re-admit me, and instead yesterday I got IV fluids in the hospital, and now I'm saddled with my favorite port-a-pump IV thingy.
I'm feeling way better today, though, which is such a relief. I think my entire GI tract just decided to go on strike. It reminded me how much I HATE THROWING UP!!!
My counts are doing ok, they were up yesterday, but down a little today. This whole process really is two steps forward, one step back. But I haven't been put on Neupogen shots, and the doctor seems fine with my numbers, so I guess all is progressing as it should.
I get a day off from the hospital tomorrow (don't have to go back till Saturday!) so we may actually go somewhere besides the hospital and the hotel! Yeah, are we crazy or what?!
That's it for today!
Sunday, July 27, 2008
Weekend report
Me and my boys after our long separation! Excuse the bald head. I was wearing a really pretty butterfly scarf, but Brigham insisted on me being bald for the picture. And I have no makeup on because I'm terrified my eyebrows and eyelashes will fall out, so I'm trying not to mess with them at all. So I look horrible, but aren't my boys cute?!
Ok! So I haven't updated since Friday evening.
I ended up going back to the hospital that night for a blood transfusion. Maybe it was the bad associations, but I ended up getting sick when I got there, which was no fun. But the transfusion went ok and we saw the last half of "National Treasure" and the first half of "The Water Horse" on the MD Anderson movie channel.
Saturday I had to go back for more blood work, and more waiting around in waiting rooms. It took extra-long for the lab results to get in, and once they did I was not happy because my counts went down (this is very normal for transplants, but still a bit discouraging to me), and they told me I needed platelets and a potassium bolus. This is ok, except that my family was scheduled to get in to Houston at 2:00, and my appointment for the transfusion wasn't until 2:00! We went to the transfusion place and asked if there was any way we could get in early, and the lady at the desk seemed to think that if we got there early, we could get called back early too. Well, we got there at 1:00, and actually got taken to the transfusion room by 1:50. Where we waited for an hour only to be told that the blood bank didn't have our platelets ready (even though the nurse ordered them at like 11:00 that morning). So we waited another hour plus, and finally got the platelets at 3:15. Then it took an hour to tranfuse, and then another wait while they tracked down the order for the potassium. Thankfully I was sent home with one of those IV balloon thingies, so I didn't have to stay longer. So we didn't get out until 4:30, and weren't at the hotel till 5:00, where my kids had been waiting for 3 hours! Frustrating.
But my weekend with the boys was just great. Ben's parents came, too, so the boys were in their room watching TV when I got in. Ben brought them in and had them sanitize their hands before coming in to see me. It's amazing how after only 4 weeks of separation, my kids looked so much bigger! They came right in and hugged me; no hesitation from Mosey which I worried about. I was wearing a hat, but of course the boys were very interested to see my bald head. So I took the hat off and Brigham promptly told me that if I only had red eyes, I would look exactly like Voldemort. Nice... I love the honesty of little children! :-)
Brigham had been dying to go to a bookstore, so Ben and the boys and I got into the van and headed to Barnes and Noble. I wore mask and gloves and probably freaked all the other customers out, but oh well. The boys picked out books (Joseph got "Dracula," a retelling of the original Bram Stoker version, Brigham, after much deliberation, picked out a coffee-table type book on Chicago since he's so into drawing big cities right now-- he told Ben he wasn't going to copy any of the buildings, he just wanted the book so he could "get ideas," and Mosey got a box set of Scooby Doo stories).
We ordered take out from Olive Garden and had dinner when we got back to the hotel.
After dinner I read a little of Dracula to the boys, and then they went swimming down in the hotel pool.
Sunday we had a leisurely morning, sleeping in and taking our time getting up and eating breakfast. We ended up having a Sacrament Meeting in our room with Ben's parents, and then eating lunch afterward. Then I read more to the boys, and by 2 or 3 PM it was time for them to go. So it was a very short, less than 24 hour visit, but it did my heart good. I stood at our 8th floor balcony and watched them leave. I can't wait until I can go home and be their mommy again.
Sunday was also the first day I didn't have to go in to the hospital! It was great!
Today has been pretty good, so far. We went in for more blood work, waited our usual hour and a half, only to be told that 2 of the 3 lab machines were not working, so all the lab results for everyone were backed up. We talked the nurse practitioner into letting us go home, and promising to come back if there was any trouble with my numbers. Sure beats waiting in that hospital for another 3 hours!
I did get a call back, and my numbers are fine. Starting to rise from Saturday, which is good. ANC (absolute neutrophil count) is up to 1.6, from 1.3 on Saturday. My heart rate was still fast (125) and my blood pressure still low (83/52), but I think maybe the doctors are giving up on trying to do anything more to fix it. I think they'll adjust on their own as I get stronger. I hope so.
So, now I'm all caught up from the weekend. The best news from today is that I don't have to go back to the hospital until Wednesday! Whatever will I do with myself? :-)
Friday, July 25, 2008
less than one day
Less than one day until I see my babies!!!!!!
Ben is bringing the boys out to Houston tomorrow morning, to spend the day and night with me. I cannot wait. I have to go to the lab tomorrow for blood work, so I'll be praying for good blood results so I don't have to stay at the hospital for transfusions.
We spent the morning and early afternoon at the hospital today. We got there about 9:30 for the blood draw, then went to the Sundial (nice waiting area for patients with windows overlooking the hospital entrance, and free cookies and coffee-- hot chocolate for us-- for patients). I thought I'd sit there and read my book, but I've been so starved from just being able to *look* at things, I just sat there the whole time and people-watched. I realized one of the hard things about the hospital stay was that, even though I had a really interesting view overlooking the medical center, I couldn't see any greenery. No trees or grass or anything.
So we went back to the clinic at 10:30, and ended up waiting for almost 2 hours before they FINALLY got my blood results (they say it normally won't take that long-- I hope not!) and got us in to talk to the nurse-practitioner. So my white blood cells are doing well, up to 2.4 from 1.8 yesterday. My neutrophil absolute count (I guess this may actually be the more important number) was up to 2.3, from 1.66 yesterday. So my brand-new bone marrow is doing it's job.
But my platelets are dropping, and my hemoglobin was 8.4. Normally they won't transfuse until it's lower than 8, but I've still got the doctors worried about my low blood pressure/high heart rate combination. I got disconnected from my IV fluids today which was a HUGE blessing. I'm not carrying around anything now! Anyway, I guess they don't think the problem is hydration (which I could have told them, because my blood pressure has been running low, and my heart rate has been climbing throughout this whole process, even when they had the fluids at their highest rate). So the newest plan is to give me blood and see if maybe my anemia is the cause of the high heart rate.
So I have to head back to the hospital tonight for a blood transfusion. It should only take a couple hours, and then we can go back to the hotel. It's a pain, but I'm not that upset, this is a minor problem to be dealing with compared with what could go wrong. I'd rather the doctors be worried about figuring out the cause of my heart issues rather than worrying about the cause of some infection!
So that's it for today. Sorry for these long travelogue type posts. Nothing else is really going on except my schedule of medical stuff, so that's what you're getting.
Oh yeah, beautiful sunshine today, instead of the pouring rain yesterday, so another reason to make me smile.
Have a lovely day everyone!
Ben is bringing the boys out to Houston tomorrow morning, to spend the day and night with me. I cannot wait. I have to go to the lab tomorrow for blood work, so I'll be praying for good blood results so I don't have to stay at the hospital for transfusions.
We spent the morning and early afternoon at the hospital today. We got there about 9:30 for the blood draw, then went to the Sundial (nice waiting area for patients with windows overlooking the hospital entrance, and free cookies and coffee-- hot chocolate for us-- for patients). I thought I'd sit there and read my book, but I've been so starved from just being able to *look* at things, I just sat there the whole time and people-watched. I realized one of the hard things about the hospital stay was that, even though I had a really interesting view overlooking the medical center, I couldn't see any greenery. No trees or grass or anything.
So we went back to the clinic at 10:30, and ended up waiting for almost 2 hours before they FINALLY got my blood results (they say it normally won't take that long-- I hope not!) and got us in to talk to the nurse-practitioner. So my white blood cells are doing well, up to 2.4 from 1.8 yesterday. My neutrophil absolute count (I guess this may actually be the more important number) was up to 2.3, from 1.66 yesterday. So my brand-new bone marrow is doing it's job.
But my platelets are dropping, and my hemoglobin was 8.4. Normally they won't transfuse until it's lower than 8, but I've still got the doctors worried about my low blood pressure/high heart rate combination. I got disconnected from my IV fluids today which was a HUGE blessing. I'm not carrying around anything now! Anyway, I guess they don't think the problem is hydration (which I could have told them, because my blood pressure has been running low, and my heart rate has been climbing throughout this whole process, even when they had the fluids at their highest rate). So the newest plan is to give me blood and see if maybe my anemia is the cause of the high heart rate.
So I have to head back to the hospital tonight for a blood transfusion. It should only take a couple hours, and then we can go back to the hotel. It's a pain, but I'm not that upset, this is a minor problem to be dealing with compared with what could go wrong. I'd rather the doctors be worried about figuring out the cause of my heart issues rather than worrying about the cause of some infection!
So that's it for today. Sorry for these long travelogue type posts. Nothing else is really going on except my schedule of medical stuff, so that's what you're getting.
Oh yeah, beautiful sunshine today, instead of the pouring rain yesterday, so another reason to make me smile.
Have a lovely day everyone!
Thursday, July 24, 2008
New Scenery!
I am writing from my new home away from home for the next two weeks!
I got discharged today, which was a very long process. They *say* they try to get patients discharged by 11 AM. Ha! We weren't walking out the doors until after 5:00 PM!
I had to be cleared by the doctor, have my final evaluation with the PT person (a really nice guy named Mario-- this sort of chubby, jolly Philippino guy), get instructions from the discharge nurse and the regular nurse, have a consult with the Pharmacy Doctor, get hooked up to my IV drip, get all my meds at the hospital Pharmacy, and then we were done!
I am still hooked to a saline drip, but hopefully just until tomorrow. The whole time I was in the hospital, I have had really low blood pressure, but a high pulse rate. My bp would frequently dip as low as 80/50, which always freaked out the nurses. I felt normal, though. And my heart rate was never below 100, and sometimes up to 135 bpm. So the doctor thought I should still be on fluid support for one more day. So I'm not entirely freed from everything, but hopefully tomorrow!
We are staying at the Crown Plaza Hotel, it's about 10 miles away from the medical center. Which I'm fine with! Close enough to be able to go back and forth pretty easily, but I can see something new outside my window. It's a nice suite, with a little (very little) kitchenette, so before we checked in, I had my first outing to the grocery store! Don't worry, I wore my mask, and used purell on the ride-on-cart handles. We loaded up on bagels, and microwave meals, and ice cream! Then, to the hotel. At first they put us in the wrong room, so Mama had to cart all our stuff twice. We (I) have a lot of stuff! She's gotten a real workout the last couple of days, getting stuff loaded back into the car, and then again into the hotel.
So I go back to the hospital tomorrow morning for bloodwork and a clinic visit plus physical therapy. Hopefully I won't need blood products, but if so I'll do that too. But after that, I am a free woman!
It was so weird to leave the hospital. So weird. In some ways it seems like forever since I came in, and in others, it was like I left one time/space dimension, and re-entered the one I left 3 weeks ago. Driving down the road was like sensory overload. So many people and buildings and things to see! It was fantastic. There were times when I didn't know if I could manage one more hour in that hospital, but somehow I did, and I'm out now! And best of all, I'll see my boys in probaby 40 hours from now. I can't wait.
I got discharged today, which was a very long process. They *say* they try to get patients discharged by 11 AM. Ha! We weren't walking out the doors until after 5:00 PM!
I had to be cleared by the doctor, have my final evaluation with the PT person (a really nice guy named Mario-- this sort of chubby, jolly Philippino guy), get instructions from the discharge nurse and the regular nurse, have a consult with the Pharmacy Doctor, get hooked up to my IV drip, get all my meds at the hospital Pharmacy, and then we were done!
I am still hooked to a saline drip, but hopefully just until tomorrow. The whole time I was in the hospital, I have had really low blood pressure, but a high pulse rate. My bp would frequently dip as low as 80/50, which always freaked out the nurses. I felt normal, though. And my heart rate was never below 100, and sometimes up to 135 bpm. So the doctor thought I should still be on fluid support for one more day. So I'm not entirely freed from everything, but hopefully tomorrow!
We are staying at the Crown Plaza Hotel, it's about 10 miles away from the medical center. Which I'm fine with! Close enough to be able to go back and forth pretty easily, but I can see something new outside my window. It's a nice suite, with a little (very little) kitchenette, so before we checked in, I had my first outing to the grocery store! Don't worry, I wore my mask, and used purell on the ride-on-cart handles. We loaded up on bagels, and microwave meals, and ice cream! Then, to the hotel. At first they put us in the wrong room, so Mama had to cart all our stuff twice. We (I) have a lot of stuff! She's gotten a real workout the last couple of days, getting stuff loaded back into the car, and then again into the hotel.
So I go back to the hospital tomorrow morning for bloodwork and a clinic visit plus physical therapy. Hopefully I won't need blood products, but if so I'll do that too. But after that, I am a free woman!
It was so weird to leave the hospital. So weird. In some ways it seems like forever since I came in, and in others, it was like I left one time/space dimension, and re-entered the one I left 3 weeks ago. Driving down the road was like sensory overload. So many people and buildings and things to see! It was fantastic. There were times when I didn't know if I could manage one more hour in that hospital, but somehow I did, and I'm out now! And best of all, I'll see my boys in probaby 40 hours from now. I can't wait.
Wednesday, July 23, 2008
Gettin' outta this joint!
Good news today! First, I'm finally able to get online and post an update myself! (this is Gabrielle).
But mostly, my white blood cell count went up to 1.0 today (up from 0.3 yesterday)! So according to that trajectory, I'm easily above 2.0 tomorrow which is the threshold for getting discharged (I keep wanting to say "released," and have to remind myself that I'm not *actually* in jail here...).
I didn't know if I could hope for discharge tomorrow, I thought maybe they'd need to see me at 2.0 or above for at least a day, and then it would be Friday and they don't discharge on the weekends, so I'd have to wait until Monday.
But the doctor came in this morning and said I could be discharged tomorrow if my counts do what they're supposed to do, and if I can drink 2 liters of water during the day. That's the hardest part! I'm still hooked up to the saline drip, although it is turned down pretty low, thank goodness. Still, though, I am really sick of the inside of the bathroom in my room. Sorry, TMI.
So tomorrow we'll be going to a local hotel, just a few blocks away. I'll have to stay there till Day +30 (30 days past the day of transplant), but then I can go HOME! And at least in the hotel, I'm not hooked up to an IV, and I can actually go some places. Even just for a drive in the car will be huge for me! I've never been so confined in my life. I've discovered I would make a horrible recluse. I need some FREEDOM!
Yesterday was a nice day. I had the discharge class in the afternoon, and then my friend Stephanie drove all the way out here to bring me some treats (Godiva chocolates... mmmm...) and a supply of really cute hats and scarves. I'm sporting a really cute blue and green scarf right now.
So, just one more night of being woken every hour for one thing or another, and then I'm outta here!
Thank you EVERYONE for all the prayers and positive thoughts. I KNOW that is why I'm getting out of here so fast. I can't WAIT to see my boys, and if I had to wait till Monday to get discharged, it would be another week before I could see them. (sorry for all the CAPS! I'm EXCITED, can you tell?!)
So, tomorrow I'll update from OUT of the hospital. Hooray!!!!!
But mostly, my white blood cell count went up to 1.0 today (up from 0.3 yesterday)! So according to that trajectory, I'm easily above 2.0 tomorrow which is the threshold for getting discharged (I keep wanting to say "released," and have to remind myself that I'm not *actually* in jail here...).
I didn't know if I could hope for discharge tomorrow, I thought maybe they'd need to see me at 2.0 or above for at least a day, and then it would be Friday and they don't discharge on the weekends, so I'd have to wait until Monday.
But the doctor came in this morning and said I could be discharged tomorrow if my counts do what they're supposed to do, and if I can drink 2 liters of water during the day. That's the hardest part! I'm still hooked up to the saline drip, although it is turned down pretty low, thank goodness. Still, though, I am really sick of the inside of the bathroom in my room. Sorry, TMI.
So tomorrow we'll be going to a local hotel, just a few blocks away. I'll have to stay there till Day +30 (30 days past the day of transplant), but then I can go HOME! And at least in the hotel, I'm not hooked up to an IV, and I can actually go some places. Even just for a drive in the car will be huge for me! I've never been so confined in my life. I've discovered I would make a horrible recluse. I need some FREEDOM!
Yesterday was a nice day. I had the discharge class in the afternoon, and then my friend Stephanie drove all the way out here to bring me some treats (Godiva chocolates... mmmm...) and a supply of really cute hats and scarves. I'm sporting a really cute blue and green scarf right now.
So, just one more night of being woken every hour for one thing or another, and then I'm outta here!
Thank you EVERYONE for all the prayers and positive thoughts. I KNOW that is why I'm getting out of here so fast. I can't WAIT to see my boys, and if I had to wait till Monday to get discharged, it would be another week before I could see them. (sorry for all the CAPS! I'm EXCITED, can you tell?!)
So, tomorrow I'll update from OUT of the hospital. Hooray!!!!!
Tuesday, July 22, 2008
COUNTS ARE UP TWO DAYS IN A ROW!
Yes, my friends -- this is a milestone worth celebrating! Two days in a row means this is not just a fluke but honest-to-goodness bone marrow growth. Her white cell count is now 0.3. It must be over 2.0 to be discharged, so we have a ways to go. But maybe by Monday, if all continues to go well. Gabrielle and I attended the "Discharge Class" this afternoon to learn all we need to know to help Gabrielle survive the germy outside world. And I am in the process of certifying to take care of her catheter properly. Can you tell GAbrielle is getting anxious to get out of here?! As wonderful at this hospital is, she can hardly wait because her boys can visit her while she is in the isolation apartment, and she MISSES HER BOYS! Today she felt good almost all day long and had a wonderful visit from her dear friend Stephanie who brought her a bag filled with scarves and hats to add to her new and exciting head wardrobe:) Who knew there were so many great thnings one can do wih head coverings?!
We were hoping to get an eagle-view of Tropical Storm Dolly as it blew through Houston, but all we got was lots of clouds and smattering of rain. Not that exciting for us, but probably a relief to everyone else outside.
Thank you all so very, very much for your prayers!
Wishing you a wonderful Tuesday night-- Christie
We were hoping to get an eagle-view of Tropical Storm Dolly as it blew through Houston, but all we got was lots of clouds and smattering of rain. Not that exciting for us, but probably a relief to everyone else outside.
Thank you all so very, very much for your prayers!
Wishing you a wonderful Tuesday night-- Christie
Monday, July 21, 2008
The Best of Times... The Worst of Times
OK, well maybe that's a bit exaggerated, but this weekend has seen some extremes in Room G1151. The good news first -- Gabrielle's white cell count rose to a whopping 0.2 on this morning's lab report!!! This is what she and all of us have been waiting and praying for. If her counts rise again tomorrow, we can safely assume that her cells have engrafted and her body is beginning to produce brand-new bone marrow, hopefully MS-free. Hurray!!
Unfortunately this good news arrived just after Gabrielle threw up, or tried to -- there was nothing in her stomach since she had thrown up everything she ate yesterday already last night. (Sorry to be so graphic -- I hope none of you just finished eating lunch!) Just when we hoped the worst was over... She was not feeling a bit well yesterday -- shakey and weak and "weird." We had a quiet day of reading the Ensign, a make-shift Sunday School class (quite excellent, if I do say so myself!), and watching a movie (so far we have seen "Ghandi," "Out of Africa," "The Man Without a Face," and "Our Mutual Friend" -- all excellent). She didn't attempt to walk yesterday, but I am hoping she will feel strong enough to walk today because I think that will help her feel better. But we are definitely taking it one hour at a time today. Just yesterday I was worried about how to keep her from getting too bored, now that she was feeling so much better... I won' have to worry about that today.
But the GOOD NEWS is very good indeed and all this discomfort will be worth it!
So... hold off on the phone calls today, but send a card or email if you get a chance -- I will print out the email so she can read them.
Until later... Christie
Her address:
Gabrielle Turner
Room G1151
U.T. M.D. Anderson Cancer Center
1515 Holcombe Blvd.
Houston, Texas 77030
OK, well maybe that's a bit exaggerated, but this weekend has seen some extremes in Room G1151. The good news first -- Gabrielle's white cell count rose to a whopping 0.2 on this morning's lab report!!! This is what she and all of us have been waiting and praying for. If her counts rise again tomorrow, we can safely assume that her cells have engrafted and her body is beginning to produce brand-new bone marrow, hopefully MS-free. Hurray!!
Unfortunately this good news arrived just after Gabrielle threw up, or tried to -- there was nothing in her stomach since she had thrown up everything she ate yesterday already last night. (Sorry to be so graphic -- I hope none of you just finished eating lunch!) Just when we hoped the worst was over... She was not feeling a bit well yesterday -- shakey and weak and "weird." We had a quiet day of reading the Ensign, a make-shift Sunday School class (quite excellent, if I do say so myself!), and watching a movie (so far we have seen "Ghandi," "Out of Africa," "The Man Without a Face," and "Our Mutual Friend" -- all excellent). She didn't attempt to walk yesterday, but I am hoping she will feel strong enough to walk today because I think that will help her feel better. But we are definitely taking it one hour at a time today. Just yesterday I was worried about how to keep her from getting too bored, now that she was feeling so much better... I won' have to worry about that today.
But the GOOD NEWS is very good indeed and all this discomfort will be worth it!
So... hold off on the phone calls today, but send a card or email if you get a chance -- I will print out the email so she can read them.
Until later... Christie
Her address:
Gabrielle Turner
Room G1151
U.T. M.D. Anderson Cancer Center
1515 Holcombe Blvd.
Houston, Texas 77030
Friday, July 18, 2008
Gabrielle Update: From her mom
Hello from the 11th Floor of the MD Anderson Cancer Center! I arrived on Tuesday, changing places with Ben to stay with Gabrielle. Gabrielle's reports are witty and charmingly descriptive -- Ben's reports are succinct and extraordinarily understandable. Mine will be none of that, I fear. But until Gabrielle is able to write her own posts, you're stuck with me!
Here's what has happened since I arrived three days ago: Tuesday evening and all day Wednesday, Gabrielle was very sick. Nausea, constant need to use the bathroom, fever, and generally feeling as horrible as a person can feel this side of the grave. The doctors had warned that these would be the worst days as her blood counts bottomed out and the last lingering chemo drugs were still affecting her weakened body. They were right. GAbrielle was discouraged and exhausted -- emotionally and physically drained. We were all very alarmed when her fever began to rise again -- worried that she would experience another MS flare-up as she did last week. But the doctors acted very agressively and the fever never rose above 101. By Thursday morning, Gabrielle was feeling like a new woman -- and looking like one too. Her hair began to fall out in clumps Thursday morning, so she persuaded me to just go ahead and shave her head. That's an experience I never anticipated I would ever have. But she looks chic and beautiful and it sure saves time in the shower! She has the perfect face for her new look and a darling collection of hats to match her pajama wardrobe :) She has handled this unwelcomed new experience as she has everything else -- with humor and good cheer and amazing faith and grace.
Today was her second good day in a row -- and we are really beginning to hope that the worst is over. Her counts are still as low as they can get. Over the past two days she has received transfusions of red blood cells and platelets to keep her going until her own stem cells start doing their thing - hopefully by this weekend her bone marrow will start multiplying and replenishing her body.
Our hope is that by next weekend, Gabrielle will be able to move to an apartment and finish her recuperation there. We'll keep you posted!!
We appreciate everyone's love and prayers and concern and faith. We couldn't do this without you--
Till next time... Christie (Gabrielle's Mom)
Here's what has happened since I arrived three days ago: Tuesday evening and all day Wednesday, Gabrielle was very sick. Nausea, constant need to use the bathroom, fever, and generally feeling as horrible as a person can feel this side of the grave. The doctors had warned that these would be the worst days as her blood counts bottomed out and the last lingering chemo drugs were still affecting her weakened body. They were right. GAbrielle was discouraged and exhausted -- emotionally and physically drained. We were all very alarmed when her fever began to rise again -- worried that she would experience another MS flare-up as she did last week. But the doctors acted very agressively and the fever never rose above 101. By Thursday morning, Gabrielle was feeling like a new woman -- and looking like one too. Her hair began to fall out in clumps Thursday morning, so she persuaded me to just go ahead and shave her head. That's an experience I never anticipated I would ever have. But she looks chic and beautiful and it sure saves time in the shower! She has the perfect face for her new look and a darling collection of hats to match her pajama wardrobe :) She has handled this unwelcomed new experience as she has everything else -- with humor and good cheer and amazing faith and grace.
Today was her second good day in a row -- and we are really beginning to hope that the worst is over. Her counts are still as low as they can get. Over the past two days she has received transfusions of red blood cells and platelets to keep her going until her own stem cells start doing their thing - hopefully by this weekend her bone marrow will start multiplying and replenishing her body.
Our hope is that by next weekend, Gabrielle will be able to move to an apartment and finish her recuperation there. We'll keep you posted!!
We appreciate everyone's love and prayers and concern and faith. We couldn't do this without you--
Till next time... Christie (Gabrielle's Mom)
Tuesday, July 15, 2008
negligence
Hi everyone,
I've been very negligent in keeping y'all updated. I've not been feeling too well, that's my excus and I'm sticking to it!
Last Thursday was the transplant day. All in all it was very uneventful. They brought up a small bag of clear fluid (I was expecting something that looked like blood, but they did a CD34 screening, so only those cells were in it, and they are clear). It took about 15 minutes. Ben actually missed the whole thing because he was downstairs doing laundry. The worst of it is that the cells are stored in DMSO which has a really funky smell that comes out in your breath and sweat. Yuck.
Anyway, the next several days are a blur of nausea and throwing up and feeling awful, so I won't dwell. I think I'm maybe starting to feel slightly better? I'm Day +5 now and start Neupogen shots. The cells should start to engraft today and in another 5-9 days my counts should really be improving.
Anyway, I'm here, hanging in there. I know this is all worth it, but at the same time I NEVER want to do this again!
Thank you for your prayers. I need endurance right now, and the ability to eat a little so I can get my strength back. Everyone wants me to get up and walk around which is hard enough for me, and even harder since I haven't been able to keep anything down in 4 days. But everyone says this is the worst of it and it will all start to get better from here.
I love everyone and miss being home!!!!!!!
I've been very negligent in keeping y'all updated. I've not been feeling too well, that's my excus and I'm sticking to it!
Last Thursday was the transplant day. All in all it was very uneventful. They brought up a small bag of clear fluid (I was expecting something that looked like blood, but they did a CD34 screening, so only those cells were in it, and they are clear). It took about 15 minutes. Ben actually missed the whole thing because he was downstairs doing laundry. The worst of it is that the cells are stored in DMSO which has a really funky smell that comes out in your breath and sweat. Yuck.
Anyway, the next several days are a blur of nausea and throwing up and feeling awful, so I won't dwell. I think I'm maybe starting to feel slightly better? I'm Day +5 now and start Neupogen shots. The cells should start to engraft today and in another 5-9 days my counts should really be improving.
Anyway, I'm here, hanging in there. I know this is all worth it, but at the same time I NEVER want to do this again!
Thank you for your prayers. I need endurance right now, and the ability to eat a little so I can get my strength back. Everyone wants me to get up and walk around which is hard enough for me, and even harder since I haven't been able to keep anything down in 4 days. But everyone says this is the worst of it and it will all start to get better from here.
I love everyone and miss being home!!!!!!!
Wednesday, July 09, 2008
Day -1
Hello All,
Today was a much, much, much better day.
Up until yesterday, I had thought I was getting off pretty easy with the chemo. But yesterday was pretty much a terrible, horrible, no good, very bad day.
I had been told the ATG could be pretty intense, but the headache I experienced wasn't on any of the side effects lists. Here's what my info said about ATG:
"ATG may cause bleeding, fever, hives, shaking, and/or chills. It may cause muscle aches, joint aches, kidney damage, liver damage, and/or fluid leakage into tissues such as the lung, causing shortness of breath. It may also cause severe allergic reactions which can cause trouble breathing and/or changes in blood pressure. ATG may cause a decrease in blood platelet counts, which may increase the risk of serious bleeding. It may cause fainting, itching, rash, facial swelling, lymph node swelling, diarrhea, and/or nerve pain. it may cause an increased risk of developing a specific type of lymph cancer."
I was premedicated with Benadryl and Zofran in the morning, as usual, and then did the Etoposide and Cytarabine. I was supposed to get a blood transfusion because my hemoglobin was really low, but there was some delay, so I went right into the ATG in the early afternoon instead. Almost immediately after the ATG was started, I started to get a headache. I got up to go to the restroom, and noticed my spasticity in my legs was noticeably worse. By the time I got back into the bed, a minute or two later, my headache had intensified, and a minute later, I was in agony. I don't know that I have *ever* experienced pain like that. Ben immediately got the nurses in my room, and they took my vitals which showed high blood pressure (which for me is really weird since I have such low blood pressure normally), and my heart racing. They called the doctor and then had me take Darvon and some other stuff, it is pretty hazy now. I somehow swallowed the medication, but then all I could do was hold a pillow over my face and cry. The nurses stopped the ATG for a while and slowly the headache started to diminish. I think they gave me more benadryl and more steroids, and then slowly started up the ATG again. I was finally able to sleep, and finished up the ATG. When I woke up, I thought the worst was behind me. I ordered dinner, but by the time it got up to my room, I started to develop a fever and chills. Pretty soon I was shaking so hard I could hardly talk, let alone eat. We called the nurses again, and they piled me up with warm blankets and started me on Demerol. That eventually helped calm the shakes, but then my fever kept going up, and up, and up.
My MS is very heat sensitive, which I've known for a while. But I guess my body has never gotten that hot before. My fever eventually peaked out at 104 point something which I think is pretty high for an adult. My MS symptoms basically went through the roof. I couldn't move at all from about the ribs down, not even a toe. I had double vision and couldn't focus on anything, and even my arms which are largely unaffected, were really weak and my hands were numb. It was really frightening because it was getting worse by the minute, and my fever wasn't going down. The nurses took off all the warm blankets and instead put ice packs around my head, neck, and belly, and got a cooling blanket to try and get the fever down. There were doctors and nurses in my room until about 1 AM when the fever finally started to come down. The on-call neurologist came in and checked me out, did all the neurological assessments, but by that time I was starting to get some movement back (hey! I can move my big toe!), and the panic level was decreasing.
I have to say the night nurses were amazing. One of the nurses, I think her name is Leah, was in my room almost continuously, and offered to pray for me. She gave the most heartfelt prayer, with her hands on my head. She was really comforting and I was so touched.
Anyway, by the time I woke up this morning, the fever was gone, and I regained nearly all the function I lost the night before, and throughout the day I believe I have gone back to baseline. So as scary as it all was, it is a relief to know that the fever-induced exacerbation really is just temporary.
Today was my last day of chemo. I got a unit of blood in the morning, which was fine, and then Melphalan later on in the morning, and ATG again in the afternoon. Here's what my info says about Melphalan:
"Melphalan may cause nausea, vomiting, and loss of appetite, diarrhea, sterility, and/or disruption of menstruation in females. Melphalan may cause mouth sores, skin rash, and/or hair loss. It may cause injury to the kidneys, lungs, heart, and/or liver. It may cause allergic reactions, including itching, hives, flushing, wheezing, chest tightness, fever, chills, muscle stiffening, breathing problems, and/or loss of appetite. It may cause heart failure, bleeding from the bladder, and/or seizures. It may increase your risk of developing a second cancer."
It sounded scary, but it was really fine. This is the drug that causes mucositis (lesions in the mouth and mucosal lining of the entire digestive tract), so they had me chew ice for an hour, a little before and after the actual infusion. I guess that causes the blood vessels in the mouth to shrink and minimize the mouth sores later on down the line. They had me dosed up on Zofran again, and I felt just fine.
I was really nervous about the second round of ATG this afternoon. The doctors told me that usually the second dose is a lot better tolerated than the first, but they were taking no chances. They premedicated me with steroids, benadryl, and tylenol, then ran the infusion over twice the amount of time, with another dose of benadryl and steroids halfway through. And it was fine! No fever! No headache! I was soooo relieved. Even though I knew any reaction I had would be temporary, I just really didn't want to experience that again!
So now I am officially done with chemo. Tomorrow is transplant day. My blood counts will continue to decrease for the next few days, and will bottom out in 4 or 5 days. I've been warned that I probably won't feel too great as this happens, but at least I know the doctors will treat any fevers and stuff really aggressively with me. I've still got my hair, but I've been told that will start falling out 7-10 days after the chemo, so I guess I've got a few more days. I've been on so much steroids since I've been here (and before-- prednisone for the stem cell mobilization), my face is starting to swell which I hate. But if I learned anything last night, it is that I'm doing all of this for a reason. I know if I did not go through with this transplant, I would be where I was last night probably within a year, and that is something I just can't contemplate. So I have absolutely no regrets at this stage of the game.
Ok, enough of this long drama for tonight. Ben has been a trooper. It's probably a weird combination of boredom, punctuated by too much excitement. He's been waiting on me hand and foot which has been incredibly helpful. He got me coke and chocolate yesterday after I emerged from my ATG headache (and before the fever). What more could a girl ask for? :-)
Today was a much, much, much better day.
Up until yesterday, I had thought I was getting off pretty easy with the chemo. But yesterday was pretty much a terrible, horrible, no good, very bad day.
I had been told the ATG could be pretty intense, but the headache I experienced wasn't on any of the side effects lists. Here's what my info said about ATG:
"ATG may cause bleeding, fever, hives, shaking, and/or chills. It may cause muscle aches, joint aches, kidney damage, liver damage, and/or fluid leakage into tissues such as the lung, causing shortness of breath. It may also cause severe allergic reactions which can cause trouble breathing and/or changes in blood pressure. ATG may cause a decrease in blood platelet counts, which may increase the risk of serious bleeding. It may cause fainting, itching, rash, facial swelling, lymph node swelling, diarrhea, and/or nerve pain. it may cause an increased risk of developing a specific type of lymph cancer."
I was premedicated with Benadryl and Zofran in the morning, as usual, and then did the Etoposide and Cytarabine. I was supposed to get a blood transfusion because my hemoglobin was really low, but there was some delay, so I went right into the ATG in the early afternoon instead. Almost immediately after the ATG was started, I started to get a headache. I got up to go to the restroom, and noticed my spasticity in my legs was noticeably worse. By the time I got back into the bed, a minute or two later, my headache had intensified, and a minute later, I was in agony. I don't know that I have *ever* experienced pain like that. Ben immediately got the nurses in my room, and they took my vitals which showed high blood pressure (which for me is really weird since I have such low blood pressure normally), and my heart racing. They called the doctor and then had me take Darvon and some other stuff, it is pretty hazy now. I somehow swallowed the medication, but then all I could do was hold a pillow over my face and cry. The nurses stopped the ATG for a while and slowly the headache started to diminish. I think they gave me more benadryl and more steroids, and then slowly started up the ATG again. I was finally able to sleep, and finished up the ATG. When I woke up, I thought the worst was behind me. I ordered dinner, but by the time it got up to my room, I started to develop a fever and chills. Pretty soon I was shaking so hard I could hardly talk, let alone eat. We called the nurses again, and they piled me up with warm blankets and started me on Demerol. That eventually helped calm the shakes, but then my fever kept going up, and up, and up.
My MS is very heat sensitive, which I've known for a while. But I guess my body has never gotten that hot before. My fever eventually peaked out at 104 point something which I think is pretty high for an adult. My MS symptoms basically went through the roof. I couldn't move at all from about the ribs down, not even a toe. I had double vision and couldn't focus on anything, and even my arms which are largely unaffected, were really weak and my hands were numb. It was really frightening because it was getting worse by the minute, and my fever wasn't going down. The nurses took off all the warm blankets and instead put ice packs around my head, neck, and belly, and got a cooling blanket to try and get the fever down. There were doctors and nurses in my room until about 1 AM when the fever finally started to come down. The on-call neurologist came in and checked me out, did all the neurological assessments, but by that time I was starting to get some movement back (hey! I can move my big toe!), and the panic level was decreasing.
I have to say the night nurses were amazing. One of the nurses, I think her name is Leah, was in my room almost continuously, and offered to pray for me. She gave the most heartfelt prayer, with her hands on my head. She was really comforting and I was so touched.
Anyway, by the time I woke up this morning, the fever was gone, and I regained nearly all the function I lost the night before, and throughout the day I believe I have gone back to baseline. So as scary as it all was, it is a relief to know that the fever-induced exacerbation really is just temporary.
Today was my last day of chemo. I got a unit of blood in the morning, which was fine, and then Melphalan later on in the morning, and ATG again in the afternoon. Here's what my info says about Melphalan:
"Melphalan may cause nausea, vomiting, and loss of appetite, diarrhea, sterility, and/or disruption of menstruation in females. Melphalan may cause mouth sores, skin rash, and/or hair loss. It may cause injury to the kidneys, lungs, heart, and/or liver. It may cause allergic reactions, including itching, hives, flushing, wheezing, chest tightness, fever, chills, muscle stiffening, breathing problems, and/or loss of appetite. It may cause heart failure, bleeding from the bladder, and/or seizures. It may increase your risk of developing a second cancer."
It sounded scary, but it was really fine. This is the drug that causes mucositis (lesions in the mouth and mucosal lining of the entire digestive tract), so they had me chew ice for an hour, a little before and after the actual infusion. I guess that causes the blood vessels in the mouth to shrink and minimize the mouth sores later on down the line. They had me dosed up on Zofran again, and I felt just fine.
I was really nervous about the second round of ATG this afternoon. The doctors told me that usually the second dose is a lot better tolerated than the first, but they were taking no chances. They premedicated me with steroids, benadryl, and tylenol, then ran the infusion over twice the amount of time, with another dose of benadryl and steroids halfway through. And it was fine! No fever! No headache! I was soooo relieved. Even though I knew any reaction I had would be temporary, I just really didn't want to experience that again!
So now I am officially done with chemo. Tomorrow is transplant day. My blood counts will continue to decrease for the next few days, and will bottom out in 4 or 5 days. I've been warned that I probably won't feel too great as this happens, but at least I know the doctors will treat any fevers and stuff really aggressively with me. I've still got my hair, but I've been told that will start falling out 7-10 days after the chemo, so I guess I've got a few more days. I've been on so much steroids since I've been here (and before-- prednisone for the stem cell mobilization), my face is starting to swell which I hate. But if I learned anything last night, it is that I'm doing all of this for a reason. I know if I did not go through with this transplant, I would be where I was last night probably within a year, and that is something I just can't contemplate. So I have absolutely no regrets at this stage of the game.
Ok, enough of this long drama for tonight. Ben has been a trooper. It's probably a weird combination of boredom, punctuated by too much excitement. He's been waiting on me hand and foot which has been incredibly helpful. He got me coke and chocolate yesterday after I emerged from my ATG headache (and before the fever). What more could a girl ask for? :-)
Tuesday, July 08, 2008
Monday Good, Tuesday Bad
... written by Ben Turner
Monday was a good day. Gabby was awake for several hours and was doing great. She also slept.
Tuesday was bad.
They gave her a chemo treatment called ATG. It is made in a lab by rabbits. They do this by putting human cells into the rabbits and letting the rabbits build an immune response against the human cells. Then they harvest the rabbits' anti-bodies and put them in Gabby! Gabby's body was not happy to receive these rabbit anti-bodies. She developed an intense migraine like headache. Later on she developed a bad fever which greatly exacerbated her MS symptoms. She is currently unable to walk and can only barely see. These symptoms are probably only temporary; it being common for these sort of symptoms to occur during intense heat (such as this fever.) Hopefully when her fever subsides she begins to regain function.
She has three more chemo treatments between now and tomorrow night, and then she is done. Then they begin to put back her bone marrow.
Monday was a good day. Gabby was awake for several hours and was doing great. She also slept.
Tuesday was bad.
They gave her a chemo treatment called ATG. It is made in a lab by rabbits. They do this by putting human cells into the rabbits and letting the rabbits build an immune response against the human cells. Then they harvest the rabbits' anti-bodies and put them in Gabby! Gabby's body was not happy to receive these rabbit anti-bodies. She developed an intense migraine like headache. Later on she developed a bad fever which greatly exacerbated her MS symptoms. She is currently unable to walk and can only barely see. These symptoms are probably only temporary; it being common for these sort of symptoms to occur during intense heat (such as this fever.) Hopefully when her fever subsides she begins to regain function.
She has three more chemo treatments between now and tomorrow night, and then she is done. Then they begin to put back her bone marrow.
Sunday, July 06, 2008
sick day
Well, the chemo caught up with me today. Every time I woke up last night I felt yuckier, and I felt really yucky by morning. The nurse gave me Phenergan and Benadryl which completely knocked me out. I could barely remember my name and medical record number when the nurses came in for my 2nd chemo in the morning. The patient has to say his or her name and record number and two different nurses are required to be there to verify the information is correct. I guess it would be bad to get someone else's chemo!
Anyway, I slept almost all day, and I think I'll have no trouble sleeping all night! I just finished my chemo for the night so I'm hoping I can just sleep through the nausea.
Nothing else to report. I think everything is going the way it's supposed to. I'm halfway through my chemo now, so yay!
Anyway, I slept almost all day, and I think I'll have no trouble sleeping all night! I just finished my chemo for the night so I'm hoping I can just sleep through the nausea.
Nothing else to report. I think everything is going the way it's supposed to. I'm halfway through my chemo now, so yay!
Saturday, July 05, 2008
Saturday report
Ok, so day 1 of Etoposide and Cytarabine wasn't too awful. A little nausea, but I was premedicated with Zofran, so it never really kicked in. Mostly just tired. I got a copy of my lab report from this morning and my counts are going down-- all mostly now below normal, which is good! (Well, good because that's what they're supposed to be doing). I did have some issues with low blood pressure, but it didn't get too low. 80/50 I think, which is low but I have pretty low blood pressure in the first place.
I was given Lasix to try to reduce some of the water I'm retaining from all the fluids. I was 8 lbs heavier this morning from 2 mornings ago. I really hate the feeling of water retention. I had to take off my rings, my fingers were getting so fat. And my face gets all puffy. I know, I know, vanity is a little misplaced in a stem cell transplant wing of a hospital, but I mostly just hate the way it *feels*. The Lasix worked in that I was in the bathroom *literally* every 10 minutes for about 2 hours. My kidneys were actually sore, they were working so hard! But I'm attached 24/7 to the saline drip, so I think it may be a losing battle. By the way, I'm sorry if all this is TMI, just remember this is also my personal record of events. I don't have the energy to write 2 accounts, sorry!!
I didn't do much today. Finished my book, watched about 3 episodes of Law and Order (does TNT play anything BUT Law and Order?!), walked around 2 of the 4 quads on our floor, and slept. Kinda boring, but I was really tired anyway.
Ben was able to go over to the Houston Texas Mutual office and get some work done which he wasn't able to do here in the hospital. He's allowed to come and go from the hospital, as long as he wears a mask for 30 minutes after he comes back in. To prevent any "impurities" he may have inhaled from outside from getting into the air in my room.
I'm feeling in pretty good spirits. A little bored and a lot missing my boys, but so far so good.
I hope everyone has a great Sunday!
I was given Lasix to try to reduce some of the water I'm retaining from all the fluids. I was 8 lbs heavier this morning from 2 mornings ago. I really hate the feeling of water retention. I had to take off my rings, my fingers were getting so fat. And my face gets all puffy. I know, I know, vanity is a little misplaced in a stem cell transplant wing of a hospital, but I mostly just hate the way it *feels*. The Lasix worked in that I was in the bathroom *literally* every 10 minutes for about 2 hours. My kidneys were actually sore, they were working so hard! But I'm attached 24/7 to the saline drip, so I think it may be a losing battle. By the way, I'm sorry if all this is TMI, just remember this is also my personal record of events. I don't have the energy to write 2 accounts, sorry!!
I didn't do much today. Finished my book, watched about 3 episodes of Law and Order (does TNT play anything BUT Law and Order?!), walked around 2 of the 4 quads on our floor, and slept. Kinda boring, but I was really tired anyway.
Ben was able to go over to the Houston Texas Mutual office and get some work done which he wasn't able to do here in the hospital. He's allowed to come and go from the hospital, as long as he wears a mask for 30 minutes after he comes back in. To prevent any "impurities" he may have inhaled from outside from getting into the air in my room.
I'm feeling in pretty good spirits. A little bored and a lot missing my boys, but so far so good.
I hope everyone has a great Sunday!
Friday, July 04, 2008
Pictures of my short hair
I had Ben take a couple of pictures of my short hair cut at the hotel a couple days ago. It's not fixed cute or anything, but you get the idea. I am really loving how easy it is to take care of here in the hospital. Basically, I don't have to take care of it at all! Maybe not quite as low-maintenance as being bald, but pretty close.
Here is my sweet niece Mara at my sister's wedding reception last weekend. Mara looks just like pictures of Rosalynde (her mom) at her age. Mara's dad loves photography, too, and has his daughter trained well to sit nicely for photos, and then come running over to see the picture on the LCD screen on the back of the camera, before running back for the next picture. Too cute!
And here's my gorgeous sister Rachel. I hate the wheelchair angle of the pictures I took at the reception (don't worry, I wasn't the wedding photographer), but this one is still gorgeous. Of course, Rachel pretty much can't take a bad picture.
I'm hoping to be able to edit some of the photos the official wedding photographer took, and when/if I do, I'll post some of them here.
Here is my sweet niece Mara at my sister's wedding reception last weekend. Mara looks just like pictures of Rosalynde (her mom) at her age. Mara's dad loves photography, too, and has his daughter trained well to sit nicely for photos, and then come running over to see the picture on the LCD screen on the back of the camera, before running back for the next picture. Too cute!
And here's my gorgeous sister Rachel. I hate the wheelchair angle of the pictures I took at the reception (don't worry, I wasn't the wedding photographer), but this one is still gorgeous. Of course, Rachel pretty much can't take a bad picture.
I'm hoping to be able to edit some of the photos the official wedding photographer took, and when/if I do, I'll post some of them here.
Not too bad
Happy 4th of July! I am wearing my 4th of July PJ pants in honor of the occasion. We saw a little of one fireworks display out our window tonight, but it was pretty far away. We heard all the noise from another display over by the downtown (about 3 miles away from the hospital), but there were too many other tall buildings in the way to be able to see it. My boys are seeing the fireworks at the Rose Bowl probably as I type, and that's the biggest joy of fireworks for me, anyway-- having my boys experience the wonder of it all. I told them to remember what their favorite kind was so they can tell me all about it tomorrow.
Here on the transplant floor we had hotdogs, chips, and punch for lunch (I got to wander out of my room for a little while with my attractive mask on), and later on there was a "pole parade" (all the patients parading around with their IV poles) and ice cream. I didn't participate in the pole parade since that was in the middle of my really bad headache, but it was kind of a sweet thing for the nurses to mark the occasion for the patients. I imagine the days will really start to blend in with one another pretty soon here.
The doctor doing rounds today was Dr. Champlain, whom I know of from a book I read. The book is called "11th Hour Miracles"), and is written by this LDS woman about her experience undergoing an allogenic bone marrow transplant back in the late 80's, when the procedure was still new and very risky. Dr. Champlain was her doctor at UCLA, and is now at MD Anderson. It was interesting meeting him after reading all about him in the book. The author really respected him as a brilliant doctor, but didn't have a ton of good things to say about his bedside manner. :-) He was nice to me, though, in the 2 minutes he was in my room listening to heart and lungs and asking the routine questions.
My first day of chemo wasn't too bad. I did get the headaches and fast heartbeat, but it was pretty tolerable. Darvon did the trick for the headaches, and the fast heartbeat only lasted a few hours after the infusion ended. Do you think I burn extra calories with a fast heartbeat? Does doing chemo count as aerobic exercise? LOL!! My heartrate only go up to about 115-120 bpm, so... probably not. I got pretty tired, which was fine, because I was able to sleep through the headache and Darvon yuckiness. I'm not sure about the brain shrinkage. Some people (like probably my entire family!) might say that I'd be better off with my head not quite so big! LOL! I do know brain volume change is one factor being tracked in this study-- the MRI's I have had and will have will measure any changes in volume. Seriously, I've always had a really big head (try finding hats to fit!), so maybe I've got some extra brains to spare? :-)
The worst thing so far has been all the fluids they're pumping into me. I understand the reasoning, since the chemo drugs can cause kidney damage, and so keeping the kidneys moving is a good thing. But still, it is a little ridiculous. I woke up this morning 5 lbs heavier than yesterday!!!!! But then today I was in the bathroom just about every 20-30 minutes, so maybe some of that has come off. But still, I would FAR rather be visiting the bathroom every 20 minutes for that purpose rather than because I'm vomiting every 20 minutes, so I can't really complain.
Early tomorrow morning I start Etoposide and Cytarabine, and I'll do 3-6 hour infusions (depending on how I tolerate it) every 12 hours for the next 3 days. Here's my info on those drugs:
Etoposide may cause nausea, vomiting, low blood pressure, hair loss, and/or fever. It may cause diarrhea, stomach cramps, muscle cramps, constipation, blood in the urine or stools, and/or difficulty swallowing. It may cause infertility, flushing, swelling of the face, and/or rapid heart rate. It may also increase the risk of developing leukemia. It may cause liver damage, mouth sores, swelling and irritation of small veins at the side where the drug is given, and/or local skin irritation if drug escapes. It may cause swelling of the lining of the stomach, skin tenderness, itching, severe allergic reaction. Etoposide may cause loss of apetite, tiredness, weakness, cough or hoarseness, and/or chills. it may cause lower back or side pain, painful or difficult urination, itchy skin rash, temporary changes in the way food tastes; unusual bleeding or bruising; and/or difficulty walking. It may cause numbness or tingling in fingers and toes, low blood pressure, fast heartbeat, loss of consciousness, and/or sweating.
Ara-C (Cytarabine) may cause nausea, vomiting, fever, chills, coughing, and/or mouth sores. It may cause diarrhea, inflammation of the colon, and/or loss of appetite. It may cause shortness of breath, pneumonia, liver damage, chest pain, fatigue, weakness, and/or urine retention. It may cause a skin rash, bone pain, eye irritation, and/or flu-like symptoms. It may cause redness, burning, and/or pain in the palms/soles. it may cause painful hand-foot syndrome. It may damage vital organs such as the heart, kidneys, liver, lungs, and/or brain. Side effects involving the brain, including dizziness, difficulty walking and standing, confusion, sleepiness, and/or coma may occur.
Since I only experienced like 3 out of 15 listed side effects with Carmustine, I bet these two drugs won't be too awful either. I'll let you know tomorrow! Off to sleep now. Any bets as to how many times I'll be up to visit the bathroom? :-)
Here on the transplant floor we had hotdogs, chips, and punch for lunch (I got to wander out of my room for a little while with my attractive mask on), and later on there was a "pole parade" (all the patients parading around with their IV poles) and ice cream. I didn't participate in the pole parade since that was in the middle of my really bad headache, but it was kind of a sweet thing for the nurses to mark the occasion for the patients. I imagine the days will really start to blend in with one another pretty soon here.
The doctor doing rounds today was Dr. Champlain, whom I know of from a book I read. The book is called "11th Hour Miracles"), and is written by this LDS woman about her experience undergoing an allogenic bone marrow transplant back in the late 80's, when the procedure was still new and very risky. Dr. Champlain was her doctor at UCLA, and is now at MD Anderson. It was interesting meeting him after reading all about him in the book. The author really respected him as a brilliant doctor, but didn't have a ton of good things to say about his bedside manner. :-) He was nice to me, though, in the 2 minutes he was in my room listening to heart and lungs and asking the routine questions.
My first day of chemo wasn't too bad. I did get the headaches and fast heartbeat, but it was pretty tolerable. Darvon did the trick for the headaches, and the fast heartbeat only lasted a few hours after the infusion ended. Do you think I burn extra calories with a fast heartbeat? Does doing chemo count as aerobic exercise? LOL!! My heartrate only go up to about 115-120 bpm, so... probably not. I got pretty tired, which was fine, because I was able to sleep through the headache and Darvon yuckiness. I'm not sure about the brain shrinkage. Some people (like probably my entire family!) might say that I'd be better off with my head not quite so big! LOL! I do know brain volume change is one factor being tracked in this study-- the MRI's I have had and will have will measure any changes in volume. Seriously, I've always had a really big head (try finding hats to fit!), so maybe I've got some extra brains to spare? :-)
The worst thing so far has been all the fluids they're pumping into me. I understand the reasoning, since the chemo drugs can cause kidney damage, and so keeping the kidneys moving is a good thing. But still, it is a little ridiculous. I woke up this morning 5 lbs heavier than yesterday!!!!! But then today I was in the bathroom just about every 20-30 minutes, so maybe some of that has come off. But still, I would FAR rather be visiting the bathroom every 20 minutes for that purpose rather than because I'm vomiting every 20 minutes, so I can't really complain.
Early tomorrow morning I start Etoposide and Cytarabine, and I'll do 3-6 hour infusions (depending on how I tolerate it) every 12 hours for the next 3 days. Here's my info on those drugs:
Etoposide may cause nausea, vomiting, low blood pressure, hair loss, and/or fever. It may cause diarrhea, stomach cramps, muscle cramps, constipation, blood in the urine or stools, and/or difficulty swallowing. It may cause infertility, flushing, swelling of the face, and/or rapid heart rate. It may also increase the risk of developing leukemia. It may cause liver damage, mouth sores, swelling and irritation of small veins at the side where the drug is given, and/or local skin irritation if drug escapes. It may cause swelling of the lining of the stomach, skin tenderness, itching, severe allergic reaction. Etoposide may cause loss of apetite, tiredness, weakness, cough or hoarseness, and/or chills. it may cause lower back or side pain, painful or difficult urination, itchy skin rash, temporary changes in the way food tastes; unusual bleeding or bruising; and/or difficulty walking. It may cause numbness or tingling in fingers and toes, low blood pressure, fast heartbeat, loss of consciousness, and/or sweating.
Ara-C (Cytarabine) may cause nausea, vomiting, fever, chills, coughing, and/or mouth sores. It may cause diarrhea, inflammation of the colon, and/or loss of appetite. It may cause shortness of breath, pneumonia, liver damage, chest pain, fatigue, weakness, and/or urine retention. It may cause a skin rash, bone pain, eye irritation, and/or flu-like symptoms. It may cause redness, burning, and/or pain in the palms/soles. it may cause painful hand-foot syndrome. It may damage vital organs such as the heart, kidneys, liver, lungs, and/or brain. Side effects involving the brain, including dizziness, difficulty walking and standing, confusion, sleepiness, and/or coma may occur.
Since I only experienced like 3 out of 15 listed side effects with Carmustine, I bet these two drugs won't be too awful either. I'll let you know tomorrow! Off to sleep now. Any bets as to how many times I'll be up to visit the bathroom? :-)
Thursday, July 03, 2008
In the hospital
So I'm finally in my hospital room! Yesterday I only had a couple of appointments in the morning, then we went back to the hotel and slept since I had about 3.5 hours of sleep the night before (took forever to pack, got off to a late start, didn't get to sleep until 2:00 AM). We went out to eat with my cousin Paul who is going to Rice (right across the street from the Medical Center). We had fun talking about Rice and how things have changed over the past 14 years. It has been 14 years since I matriculated at Rice!!!!! I can't believe that, really I can't.
Today I had appointments in the morning, just more blood draws and labs to make sure I'm not sick or anything, and finally a visit with Dr. Popat (my transplant doctor). We got out by about 12:30, and had the afternoon free. We drove around the Galleria (really nice area west of the downtown with fancy buildings and expensive stores), ate lunch at a Mexican restaurant, and then watched Get Smart at a theater (really funny movie, by the way, we both liked it a lot). We got the call to come over to the hospital at about 6:30, and now here we are!
I am in room G1151. We're up on the 11th floor with a great view towards the west. There's supposed to be a huge fireworks display over near the galleria, which we ought to be able to see pretty well from here.
I'm now hooked up to IV's and set to start my first chemo drug in the morning. I'll be on Carmustine. Here's what my information packet says about Carmustine: "May cause flushing of the skin and a bloodshot appearance of the eyes. It may cause damage to the lungs, resulting in shortness of breath. It may cause low blood pressure, chest pain, and/or fast heartbeat. Infusion of Carmustine into or around the vein may cause pain, tenderness, muscle pain, hardening, and/or inflammation. It may cause nausea, vomiting, diarrhea, loss of appetite, headache, hair loss, allergic reactions, and/or liver and/or kidney damage. Carmustine may cause seizures. Brain shrinkage has also been seen after high-dose Carmustine, but the side effects are not known."
Lovely, huh? The nurse told me the most common side effects are headache and jaw pain, so I'll let you know.
I have to stay in my room while actually getting the chemo infusions, but otherwise I can wander the floor if I want, as long as I'm gowned, gloved, and masked. The whole floor is a transplant floor. In fact, the nurses emphasized that it is good to get up and walk as much as possible. Too bad I can't walk! Ha ha, actually I can hobble around a little, just probably not the 1 mile they are recommending per day. One mile, can you imagine? I made it 185 meters yesterday during my EDSS scoring. But that is a whole heck of a lot better than nothing, believe me.
So I'm enjoying my last night of feeling good. Of course they're pumping me full of fluids tonight so I'll be up every half hour using the bathroom. Between that and the every-4-hour vitals check, I might not get that much sleep. But what else have I got to do here but nap? I'll survive, and if a little sleep deprivation is the worst of my experience, I'll be the luckiest person alive.
I have a room phone, but I'm not sure the number at the moment. I'm available on my cell-phone, though.
Good night everyone! I'll update tomorrow night, or if I'm feeling too yucky, I'll have Ben do it.
Today I had appointments in the morning, just more blood draws and labs to make sure I'm not sick or anything, and finally a visit with Dr. Popat (my transplant doctor). We got out by about 12:30, and had the afternoon free. We drove around the Galleria (really nice area west of the downtown with fancy buildings and expensive stores), ate lunch at a Mexican restaurant, and then watched Get Smart at a theater (really funny movie, by the way, we both liked it a lot). We got the call to come over to the hospital at about 6:30, and now here we are!
I am in room G1151. We're up on the 11th floor with a great view towards the west. There's supposed to be a huge fireworks display over near the galleria, which we ought to be able to see pretty well from here.
I'm now hooked up to IV's and set to start my first chemo drug in the morning. I'll be on Carmustine. Here's what my information packet says about Carmustine: "May cause flushing of the skin and a bloodshot appearance of the eyes. It may cause damage to the lungs, resulting in shortness of breath. It may cause low blood pressure, chest pain, and/or fast heartbeat. Infusion of Carmustine into or around the vein may cause pain, tenderness, muscle pain, hardening, and/or inflammation. It may cause nausea, vomiting, diarrhea, loss of appetite, headache, hair loss, allergic reactions, and/or liver and/or kidney damage. Carmustine may cause seizures. Brain shrinkage has also been seen after high-dose Carmustine, but the side effects are not known."
Lovely, huh? The nurse told me the most common side effects are headache and jaw pain, so I'll let you know.
I have to stay in my room while actually getting the chemo infusions, but otherwise I can wander the floor if I want, as long as I'm gowned, gloved, and masked. The whole floor is a transplant floor. In fact, the nurses emphasized that it is good to get up and walk as much as possible. Too bad I can't walk! Ha ha, actually I can hobble around a little, just probably not the 1 mile they are recommending per day. One mile, can you imagine? I made it 185 meters yesterday during my EDSS scoring. But that is a whole heck of a lot better than nothing, believe me.
So I'm enjoying my last night of feeling good. Of course they're pumping me full of fluids tonight so I'll be up every half hour using the bathroom. Between that and the every-4-hour vitals check, I might not get that much sleep. But what else have I got to do here but nap? I'll survive, and if a little sleep deprivation is the worst of my experience, I'll be the luckiest person alive.
I have a room phone, but I'm not sure the number at the moment. I'm available on my cell-phone, though.
Good night everyone! I'll update tomorrow night, or if I'm feeling too yucky, I'll have Ben do it.
Tuesday, July 01, 2008
Off to Houston for the long haul
Hi Everyone,
I only have a few minutes because I'm trying to get packed up and on the road before it's too late.
The last couple of weeks have been a whirlwind! I spent a few days in Houston two weeks ago for the last round of testing and getting the CVC line placed, and starting the stem cell mobilization. Then I went home for a weekend and then back to Houston for the collection.
The collection went fine, I didn't get super cold like I did during the first apheresis run. I think it was because of the mobilization drugs I was on. Neupogen causes the bones to produce and release stem cells from the bones into the blood stream. It causes an increase in all blood counts, and can cause fevers, which I think accounted for my not being too cold.
Neupogen itself is pretty yucky, though. The most common side effects are bone pain, but I didn't get any of that. I got horrible, intense headaches. I've never had headaches like that before, extra strength tylenol did not even TOUCH them. When I got back to the hospital, the doctor prescribed Darvon for me, which did help with the headaches, although not entirely, and also served to make me loopy and nauseated. But overall, it was tolerable. I just had to sit there in the apheresis center and veg out for 4 hours, then go back to the hotel room and veg out some more. :-)
I collected for 3 days, and then Thursday had a follow up to make sure my blood was doing what it was supposed to be doing, and then got my CVC (central venous catheter) line changed out to a couple of smaller tubes. It is way more comfortable and easier to take care of, so that is good.
Then Friday morning we were off to California for my sister's wedding! It was amazing and I loved every minute of being back home with my family.
Yesterday morning my mom cut my hair really short! I didn't want it long in the hospital (too hard to take care of and too yucky when it starts falling out). So it is short! Very short in back, and a little longer on top. I didn't tell Ben about it, so he was surprised when he picked me up from the airport this afternoon. He's not totally loving the new 'do, but I told him he'll probably like it a lot better than he will a few days from now! LOL!
I was scheduled to fly home Sunday, but just couldn't leave my boys so soon, so I flew out today instead. It was very, very hard for me to leave my boys. I'm sure the people in the plane were all wondering what was wrong with me. But I know they'll be taken care of probably better than I can take care of them! And they will have a very good time.
Ben and I drive out to Houston tonight, I have a CAT scan at 6:30 in the morning, then a final neurological assessment at Baylor. Thursday I have all the pre-admitting stuff, and then I'll be admitted for the duration.
I'll try to update every day, or if I can't, have Ben update for me. It's hard to believe this is finally happening!
Ok, off to pack.
I only have a few minutes because I'm trying to get packed up and on the road before it's too late.
The last couple of weeks have been a whirlwind! I spent a few days in Houston two weeks ago for the last round of testing and getting the CVC line placed, and starting the stem cell mobilization. Then I went home for a weekend and then back to Houston for the collection.
The collection went fine, I didn't get super cold like I did during the first apheresis run. I think it was because of the mobilization drugs I was on. Neupogen causes the bones to produce and release stem cells from the bones into the blood stream. It causes an increase in all blood counts, and can cause fevers, which I think accounted for my not being too cold.
Neupogen itself is pretty yucky, though. The most common side effects are bone pain, but I didn't get any of that. I got horrible, intense headaches. I've never had headaches like that before, extra strength tylenol did not even TOUCH them. When I got back to the hospital, the doctor prescribed Darvon for me, which did help with the headaches, although not entirely, and also served to make me loopy and nauseated. But overall, it was tolerable. I just had to sit there in the apheresis center and veg out for 4 hours, then go back to the hotel room and veg out some more. :-)
I collected for 3 days, and then Thursday had a follow up to make sure my blood was doing what it was supposed to be doing, and then got my CVC (central venous catheter) line changed out to a couple of smaller tubes. It is way more comfortable and easier to take care of, so that is good.
Then Friday morning we were off to California for my sister's wedding! It was amazing and I loved every minute of being back home with my family.
Yesterday morning my mom cut my hair really short! I didn't want it long in the hospital (too hard to take care of and too yucky when it starts falling out). So it is short! Very short in back, and a little longer on top. I didn't tell Ben about it, so he was surprised when he picked me up from the airport this afternoon. He's not totally loving the new 'do, but I told him he'll probably like it a lot better than he will a few days from now! LOL!
I was scheduled to fly home Sunday, but just couldn't leave my boys so soon, so I flew out today instead. It was very, very hard for me to leave my boys. I'm sure the people in the plane were all wondering what was wrong with me. But I know they'll be taken care of probably better than I can take care of them! And they will have a very good time.
Ben and I drive out to Houston tonight, I have a CAT scan at 6:30 in the morning, then a final neurological assessment at Baylor. Thursday I have all the pre-admitting stuff, and then I'll be admitted for the duration.
I'll try to update every day, or if I can't, have Ben update for me. It's hard to believe this is finally happening!
Ok, off to pack.
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