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!
Thursday, July 31, 2008
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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