Living It Up In Lincroft
I just got back from the doctors, and have updates. First, it was funny when I got there, the nurse who does my blood pressure and weight was all excited to tell me that he had thought of having them try this numbing spray stuff that they use in pediatrics before blood work, so I was like, sure! Let’s try, I'm game! Turns out it didn't do much of anything, but hey, it made for some fun banter.
Then the doctor came in and checked out everything like my mouth and rash (which is gone) and we talked about what meds I'm on and doses. We talked a little but too about the results from the bone marrow biopsy last week. There are no traces of Leukemia in the bone marrow at this point, which is awesome news. However, he's a little concerned because I am not 100% donor, I'm 95% donor cells and 5% my cells. What this means is that we have to wait until the end of the week to see another result from the tests, if the abnormal cell is still present in me, then that could mean the remaining 5% is bad cells and will need to be possibly treated. If there is no evidence of the cell malformations then the remaining 5% of my cells might not be bad.
In the meantime while we wait for those results, we are going to lower the steroids now dramatically faster. Last week I was on 40 mg every other day, now we're going to 30 every other day and next week down to 20 every other day. The doctor said that sometimes getting rid of the steroids and Prograf meds will allow the donor cells to reach 100%. I really hope this works, because if it doesn't he said I will have to "get another dose of the donor cells" which to me sounds like another transplant. But I'm trying not to jump to any conclusions and I'm hoping that getting rid of the steroids will do the trick.
Over the weekend, we had little Lucien and Justen visit. It was Loosh’s birthday, he is turning 14, so we got him a Dallas Cowboys shirt and I made him a football cake. (Actually he helped me make it!) Then he and I decorated the whole house for Christmas! (We had to because of our schedule this month, so it's up early, and I love it!) All three trees are up, the village is done, the curtains are changed, and he helped me do everything! All “daddy” Lucien had to do was put the angel on top of the tree and the lights in the tree.
The rest of the weekend we played x box, we have a new game someone gave us (thanks Roy!!!) with these piñata gardens, it's so much fun! I stayed up with the boys until 1 am playing it Saturday night and we were up bright and early playing again on Sunday! Then Lucien beat the boys over and over at Madden Football, and then little Lucien kicked all our butts in Archery in the Olympic game. We had a great time, it was an awesome weekend!
Lots of updates today! I'll start with my doctor appointment yesterday (Monday). First they did blood work, which they always get the very first time... well, wouldn't you know it took them three times to get it? I ended up crying my eyes out all through the blood work which hasn't happened in forever. Thus began my worst visit ever. They did tell me to lower the steroid dose again, which is awesome! But next was the bone marrow biopsy.....
I had to lie on my stomach, and already at this point I was hysterically crying and shaking. They poked around looking for the right spot then cleaned the area. By the time they were starting to numb the area, I was already a wreck and there were nurses holding my legs down. How could I help it?! All those little needles, my worst nightmare and it hurt! Then came the big one, Lucien says this needle looks like a corkscrew. I was in more pain than I can remember since childbirth. I was screaming so loud, and crying so hard, everyone was trying to calm me down, and Lucien just kept telling them, "There's nothing you can do, just keep going". And they did. Finally it was over. The head nurse looked at me and addressed the room, "I don't care what anyone says, in 6 months when it's time for another biopsy you get put to sleep. No one should have to go through this much agony. Never again!" She was insistent that everyone hear her, and I sure am relieved. So the rest of the day and night I slept right through, with Lucien waking me up for dinner. Today I am still SO sore, it hurts really bad to just get to the bathroom, and sitting aggravates the area really bad. It's just awful and I don't wish a biopsy like this on anyone.
On a much happier note, the Benefit concert Saturday night went unbelievably well! We had our usual "sound check" problems, this time though it was a power issue with the theater, if it weren't for my father being there and figuring the whole issue out, it would have been a enormous problem!
Lucien and I performed the opening performance of the show. We played songs from our latest album Deal With It (if you don't have it yet, stop by iTunes and see what you're missing!). We performed Deal With It, Message For Peace, Childhood Friend. Then I stood and sang my version of Fleetwood Macs Landslide. Then the big surprise of the night, the band came out and we did Give Em A Fight. The crowd went crazy, it was awesome! Give Em A Fight is the perfect cancer battle song! It took a lot of energy, stamina and guts to get on stage this soon after a transplant. Mostly, it was very difficult for me to get on stage in front of all those people looking as round, chubby and different as I do right now from the steroids. However, I have to admit that getting on stage again and that before show adrenaline was the best medicine in the world! I’ve missed the stage so much, it was incredible to be back!
The Beatlmania Stage Show, of course, went without flaw, it was great and everyone had a great time. We had a lot of fun joking around backstage too doing impressions and just having a good time. Thanks Jon, Jess and Joe for helping to make this night extra fun! You guys are the best!
After the show we did the usual meet and greet in the lobby and got to personally thank a lot of people for coming, the line was so long though that we didn't; get to see everyone. The night was great, everyone had a wonderful time and if you want to see more pictures from the night check out the Beatlemania page of my site! Thank you to everyone who came out and enjoyed the event with us! We love you all!!
Everything is coming along nicely for Saturdays Benefit. Everyone is coming to me and asking how they can help which has taken a huge load off of me to get everything ready. The raffles are going to be a lot of fun! There are a few I sure would like to win if I was allowed to enter!! : ) It's going to be such a wonderful weekend, I'm so excited to have everyone who we love in one big room together for a such a fun night, it's really like a big party. A lot of my family is coming down from New Hampshire for the weekend, and they will be helping out tremendously Saturday night. Then Sunday morning I think we're planning on going out for a nice brunch before they head home. Then, of course, Sunday the Jets are home, so I know we'll have the game televised, and what a way to wind down after all this running around but with a Brett Favre football game?! I'll have to get all dressed in my #4 jersey, it's a shame it’s a Packers one though, I'll have to update and get a Jets Jersey eventually. Maybe for Christmas! It's really the perfect weekend; I don't know what else I could ask for!
So this is probably the last update I'll make until the middle of next week (since I have the bone marrow biopsy planned for Monday morning, I'll be out of commission for two days or so). So I'll put up lots of pictures and details from the benefit concert then, and until then, I hope to see you all there on Saturday!!! Love to you all!!
It's November! Where is time going?! Halloween was Friday and was so much fun! We took the kids out Trick or Treating for as long as I could last which was just about an hour. Not too bad! Adrian was Buzz Lightyear from Toy Story and Luciana was a pink poodle. They had a really good time; I wish I could have lasted longer for their sake. Adrian could have gone another hour, and I wish we could have. I was just so exhausted; we had to cut the night short.
No doctor’s appointment this week! It was so nice to wake up on a Monday and not have to truck up to the cancer center! Not that I don't love everyone there, but being home for those four hours was a lot better. I'm feeling pretty good this week, just realllllly tired. I don't know if that's from the lowering of the Steroids or the time change or what. I do have a good feeling that I am *perhaps* doing something very typical of myself, and over doing it. I think I'm taking on way too much since this is the week of the big Benefit Concert! I'm super excited, and a lot is done, but there's so much that has to be done too. As stressful and exhausting as it is, it's really gratifying and I can't wait until Saturday. Lucien and I have some surprises planned that *no one* knows about, not even my mother and not even the queen of getting things out of me, Mya! Nope, no one knows our surprises!
We hope everyone can make it Saturday night! Mark it down in your books, November 8th, 6:30 Showtime, at Middletown High School South Theater! Come with the whole family and all your friends, for a full night of music, raffles, concessions and all kinds of fun things! Beatlemania doesn't come around this area too often, so come enjoy a great show and have a lot of fun! Tell everyone you know and let's sell out the theater!!
Well, if I don't get a chance to update again before the weekend, see you all at the show!!!!!!!!! Love to you all!
Hello everyone! What a week / weekend / day it's been! I'll start with the news of the day from the doctors office, which of course is a little good news, and a little "eh" news. The good news is that the Steroids got lowered again! Now they're 40 mgs and 10 mgs alternating every day. That means in another 10 days, I should be able to stop taking them on the every other day! I'm really excited about that. The other good news is that I only have to go to the doctors officially every other week from now on! That's because this coming Thursday, the 30th is my official 100 Day post-transplant mark. That is a huge milestone, and everyone is congratulating me already on reaching it so well. The nurse I saw today even said that my blood counts this whole time have been rock solid. Let’s hope it stays that way! Now the news that I'm less than thrilled about.. I knew it was coming... they scheduled be for another bone marrow biopsy. Ugh!!!! I dread that, the anxiety, the pain, the grogginess from the overload of Ativan that I get for the next 24 hours... oh I dread this. The fortunate thing is that it's not for two weeks, so it's scheduled for the Monday after the benefit concert. I am really nervous already about the biopsy though, I just have to try to not think about it.
The week here was crazy, Luciana had a runny nose that probably wasn't anything bad, but could turn into something bad if I caught it, so I had to stay clear away from her. But the kids are doing well; it was one of those weeks where I feel like they both just sprouted!
That’s on my end; the weekend was pretty uneventful minus the fact that Saturday was Lucien and my 5th wedding anniversary. We spent it just the way we wanted to, with the kids! We had a good quality family weekend and I wouldn't have wanted it any other way. Other than that, every spare second we have we're spending on preparing for the benefit. Remember to tell everyone you know to come see Beatlemania Saturday November 8th!!! We're never ever local so now's the chance to come see the show! Not to mention the opening act that Lucien and I will be performing, songs from the album Deal With It that we released in February. Gather all your friends and family of all ages and come see Beatlemania!! I'll update soon! Love to everyone!
PS - Has anyone secretly arranged for Brett Favre to make an appearance yet???? : ) kidding : )
I went up to the hospital yesterday but I didn't see the doctor, it was only blood work that they did. That's a good sign I'd say, but it would have been nice to not have that done either. But I was only there about a half hour then came home. I haven't heard anything from them about the results, so usually no news is good. The only thing I am dealing with right now is that my eyes are getting very bad over the past couple weeks. I used to have perfect vision; I could find the backing to any earring in any carpet! But a few weeks ago they started getting blurry a little bit, and lights at night bother me *a lot*. I think the doctor said he wants to send me to get them checked, which would be great, because it's getting hard to deal with at this point.
The weekend was a lot of fun. Lucien had a show in Philadelphia on Friday night, so Mya stayed with me to help me with the kids. We ended up having so much fun doing all juvenile "sleep over" -esque activities! I worked on her plastic canvas pumpkin while we watched a crazy movie, we played X Box for a long time then topped off the night after the kids went to bed with caramel ice cream sundaes. It was like being 13 again!
Saturday Lucien had two more shows down in Philly, so the kids went to stay with his parents, and I was able to go to the shows with him. It was a really cute theater, and since he had played there the night before, he knew there was a lot of space away from the people for me to stay in the back of the room. It was really good to see the guys again. The show was a lot of fun, there were some different production songs that we don't always get to do so it was cool to hear some different tunes.
It was a nice early night, we were packed and out of there by 10:30 and on our way home. In the car we went over the songs that we'll be performing for the opening act at the benefit concert. I think we might have figured out the song we'll end with, but we have to get the guitars out and see if it jives well. Oohhh.. What could it be?? The suspense!
Time for an update! It's great to be back at the front desk again, taking back over the phones and scheduling. I love it, and so does Lucien! It's a big load off of his shoulders that he doesn't have to worry about all of that, and he shouldn't have to because it is a whole job in itself. It's been great seeing everyone; I can't believe how tall all of the younger students got over the summer!
I did see the doctor today. It was a short visit, which was really nice. They did blood work like usual, and I didn't hear anything from them today, so that means everything was probably fine. He didn't say anything about my skin, so that must be good, and he was happy to hear that I am stronger this week. I did have some strange leg pains over the weekend, but my friend Mya and I (yes, she IS a nurse, so she has reliable information) came to the conclusion that it was something to do with the muscle and not being used to walking around being as physical as I have been. There was a medical term for it, but I can't for the life of me remember it! That pain got about 50% better today, so hopefully tomorrow it won't be as bad.
Anyway, the doctor told me to lower the Steroids again starting Friday to 40mgs on day and 20mgs the next. He said as soon as we get to every other day, the symptoms will dramatically get better. Yay! I hope that means the poofy face and belly too, because I want to look half way decent for the Benefit Concert! We'll see, maybe if I drink a little more water too the poof will go down. Only time will tell.
That's all from here, for the most part, uneventful. We're just getting ready for the Benefit Concert. We do so many Beatlemania shows in a year, that we are far from excited over (they are a lot of work for us), but this one is different because it's local and all our friends and family will be there. We're really looking forward to it! If you're planning on coming, we are recommending that you get your tickets in advance, because they are already going fast and they just went on sale this week. This is great news of course, but I also don't want anyone we know to lose out if you are planning on coming. I'll update later this week on everything, thanks for checking in!
We have a lowered Steroid dose announcement! (This is major good news to me!). Instead of 40mg a day, I'm taking 40mg and 30mg, alternating every day. I wish it was just 30 every day, but eh, I'll take what I can get.
I am feeling much better this week, much stronger. I can walk across the room a little faster and the stairs are a little better than turtle speed now. I am even starting today to be back in the waiting room and taking care of phones and scheduling of the business. Lucien is thrilled about me going back to my duties and taking it off his plate! He thinks he might react though and answer the phone accidentally by habit... it has been 9 months of him juggling his job and mine, I don't know how he did it.
So I am right now in the waiting room on the regular computer, not a laptop for a change, as I write this. It's exciting to be able to work again. I can't take a check or money from someone's hand, they still have to put it in the "payment box" to be safe with the germ factor, and I can't touch the doorknob or anything, but I can sit here and answer the phone! I can't take care of the kids totally yet, as far as diapers, and lifting Luciana in and out of her crib is impossible. So I still have babysitters coming to help me with the kids at night. I'll start slowly maybe one night a week at a time taking care of the kids. I just need to make sure I'm strong enough that I don't fall down the stairs carrying the baby or anything (don't laugh, I tried over the weekend and that almost happened!)
Things are going awesome for the Beatlemania Benefit Concert. There are several local papers that are interested in covering our story and the event itself, and there are a few radio stations that are advertising for us. We are really excited, and are rehearsing our opening act. It feels good to pick up my Acoustic again (ahh.. my beautiful Fender Malibu!) Anyway, tickets go on sale officially tomorrow, Friday the 10th. Please spread the word and tell everyone you know about the show! If you're in for a lesson you can ask us for some flyers, we have a ton of flyers to give out that you can give to everyone you know. Our goal is to sell out, so if you can help to make that happen, that would be awesome! I'll update again soon!! Love to you all!
Hello everyone! Well, no updates as far as doctor appointments this week since I have the week off from going! That's exciting because it means I must be doing well. This week I am much stronger, although I have had some days with bad joint pain. My skin even looks like it is clearing up from the rash a little bit. My favorite part though is that my poofy face and belly from the Steroids seems to be going down a little bit.
So I'm sure by now you've all seen the info about the Beatlemania Benefit Concert on the main page. The night is being hosted by the church - we are working together to get all the details straight. The show will be held at the Middletown High School South Theater. Lucien and I are super excited that this event is able to take place; it's really going to be such a fun night to have everyone we love in one room just partying and having a great time. All the proceeds will go towards the medical bills that continue to come in from my treatments, so the more tickets we sell, the more we can pay off. Lucien and I will be performing a 30 minute opening act, performing some songs from Deal With It as well as some other songs. I miss performing so much, I can't wait to get on stage and sing for everyone!
So mark your calendars, November 8th and buy your tickets! You can buy them at several locations which I will list on the site, or you can buy them at our music school. They are $30 general admission. So please purchase your tickets and spread the word! If you'd like some flyers to give out or hang at your place of work, let us know and we'll give you some to pass around. So tell your family and friends and let’s fill that Theater!
I will continue to update this week when I hear anything from the doctor. He is supposed to call and tell me to adjust some of my meds (hopefully lower the Steroids again!). I will also update with any new information about the Benefit Beatlemania Stage Show Concert! It's going to be great!
So I finally got to the doctor yesterday from rescheduling from Monday. It was a chaotic visit though. There are several different areas of the building that the doctors rotate where they are on different days. Two people sent me to the wrong area apparently where I waited for an hour before someone realized. I knew I wasn't going to see my usual doctor because he was on rounds in the hospital, but I was supposed to see his nurse. So anyway, I get to the right place, they do my blood pressure and weight (all the fun stuff), but I did lose a pound this week! yay! We do the blood work... ugh... and then I wait for the nurse, who is nowhere to be found. Someone comes in the room then and says, "I looked into everything and it looks like you had a 9 am Pulmonary Function Test over at the hospital because of your cough." Nice of someone to tell me that.
Anyway, to shorten this story a little, I said no, I will not be doing that test today, my ride will be here in a half hour. The nurse came in and checked me out, she said my platelets last week went up to 93 which is good they are starting to go back up. She looked at my skin, and doesn't think it looks bad so she called the doctor and told him that I don't need to make a Dermatologist appointment just yet (awesome news). I do have a cough that I've had for about a week. I caught it from Luciana, so I know that's what it is. They are concerned that it could be Graft Versus Host Disease of the lungs, so I have to keep an eye on it and let them know if it gets worse. Other than that, they said since it is Wednesday already, I don't have to come back on Monday. I do have to call though and tell the doctor how I am feeling on Monday, and he'll probably lower the Steroids over the phone at that point. Then, I don't have to go back in until the Monday after! (Which is Columbus Day, so I have to call and see if they are actually open).
So that's how that went! Nothing too new other than that. I'm getting ready for my Mom and Aunt Carole to visit this weekend, that's going to be a lot of fun. I'll also try to get some pictures on here of the Halloween decorations in our house; I go crazy in the waiting room with new curtains and decorations everywhere. I love this time of year and decorating like a crazy woman. It's so much fun.
Fall is in the air, and I love it! This week was great, we got to open the windows, turn off the air and get some fresh air into the house. For me, that was so wonderful after being in cooped up spaces for so many months. There's nothing like fresh air and watching the curtains move in the breeze, I'm enjoying every second of it. It’s the little things in life that bring me so much undeniable joy these days!
I did have a doctor appointment scheduled for today, but was unable to get a ride. So I have to call and reschedule for another day this week. So, no medical updates there. I know the doctor won't be happy, he really wanted to see me today to monitor my skin and the graft versus host disease since we lowered the Steroids last week, but I couldn't get to north Jersey today any way I tried to make it happen.
My legs got a little stronger this week, maybe that's due to the lower Steroids. We also had lowered another drug called Prograf to try to stop the shaking that I have in my hands. That didn't work; I still shake like a leaf. Everyone sees my hands going and tell me, "Wow, look at you shaking!", but I don't even notice it all the time anymore unless I'm trying to eat, write or type or something. And of course, I was sick a little last week, and now over the weekend it got worse. I have a bad cough now, runny nose and am really tired (more than usual) and really sore. It feels like the flu, but it's not. It's awful! The cough keeps me up all night so I'm extra exhausted and end up sleeping all day. I hope it goes away soon.
Other than that it was a crazy week home wise too. Adrian is having trouble in school so we were on the phone with teachers and emailing them back and forth all week. Ah, the fun little parts of being a Mommy that they don't tell you about! Luciana just does her thing, walks around demanding what she wants... and getting it. Over the weekend we decorated the waiting room for Halloween. I love it! This is my favorite time of the year; I go bananas with the decorations all the way through the New Year. I handmade all these little black bats and we hung them everywhere, set up a display in the bay window with my Halloween tree, and there's pumpkins everywhere. It's such a fun atmosphere, and just puts a pleasant feeling in the house. Fall is the best! Makes me want to bake an apple pie... or maybe just buy one at the store, I'm too tired to bake! I will update after I do get to the doctor this week.
Happy first day of fall! I love this time of year, the weather is so beautiful. Hopefully I can get out and enjoy some of it under a shady tree or something. It would be nice to get the kids outside a little before the cold comes too. And I can't wait to decorate for Halloween! This is my favorite time of year, since as everyone knows I go curtain and decorating crazy! I love it.
My appointment today went fairly well. My platelets last week doubled which is good, and I don't know what they did today yet. The doctorr said he would call me and let me know how everything looks. I told him he only had to call if something was wrong or pills have to be changed, but he said he would call either way, he thinks I should know too if things got better. He really wants me off of the Steroids, so he's lowering my dose again starting Friday I'll go down to 40 mgs a day. He said he's lowering them much faster than is usual, I guess that's good and means I can handle it. I like that they are aggressive with things, it makes me think that they are confident I can handle it.
On the flip side, he does want me to meet with the Dermatologist to see if they agree that I should do the ultra violet light therapy for the skin graft versus host disease that I have. It's not getting better or worse, but the doctor thinks we should address it in case it decides to get worse. So I have to set up that appointment and we'll see what they think.
The weekend was awesome, we had Lucien's boys stay over, and it was Justen's birthday, he's ten years old already. So we had a little birthday party for him. I made him a Basketball cake, which was cute and Lucien's parents ordered some pizzas. Later we all played the Olympic Games on the Xbox, and then Basketball on the Xbox which was great. Little Lucien and I were on the same team in Basketball and won, which was amazing considering I never watched one Basketball game in my life!
Other than that, the little munchkins are good. Adrian started potty training for nighttime Saturday, which is of course not going too well. He woke up wet Sunday morning and woke up Lucien and I at 4 am Monday morning because he wet the bed again. He's 5 though, and no matter how tired we are, I want Adrian night trained. Luciana ended up getting a fever Thursday so I had to stay far away. She went to the pediatrician on Friday and now she's on an antibiotic, a nasal decongestant and two different fever reducers to alternate. She's looking much better today though, but my doctor told me to stay away still, I have to be really careful. And now I will close with a thought for all you football fanatics out there regarding, what else, but the lovely Sunday night game... How Bout Them Cowboys?! Here are some pictures from the weekend. There aren’t any of me because I’ve become soooooo uncomfortable in my own skin with my massive steroid face, that I won’t allow any pictures – at all!
Things are good here, or stable I should say. The kids are still sick, Adrian is a little better, but Luciana is actually getting worse. She had a little fever last night when she went to bed and her nose is getting worse. It’s been working out where the babysitters are able to be here when the baby is up so I haven't gone near her in days (that is so hard! I just want to squeeze her little legs and hug her!). I unfortunately am still sick too. I have a cough now which gets worse at night, and I am so wiped out from the moment I wake up that it's impossible to do anything but watch TV and sleep most of the day. I think it's going to take me some extra time to get over this little sickness because of my nonfunctioning immune system. I hope it's not too long, it's so upsetting to feel weak again after I was doing a little better for those couple weeks.
Another week gone by. I can't believe I'm a little more than 50 days past the transplant. It's going so fast, and I'm so thankful that so far I haven't had to go back to the hospital. I know I could have to if I get a fever or another complication, but making it this far is huge to me.
My appointment today went well. I don't know how the platelet levels are because the results didn't come back while I was in the office. The doctor said my skin looked better and not to call the Dermatologist just yet, and we'll hold off on the whole ultra-violet light therapy thing which I am happy for. That would have been like going to a tanning booth three times a week for a half hour without the tan. It would have been a lot of traveling. I still might have to do it if the skin doesn't clear up, but for now it's on the side burner. We also are going to lower the Steroids again by very little, because over the course of the week I got a little weaker by the day, and my hands have been shaking pretty bad, sometimes I can't even write or hit the right keys on the computer – it’s super frustrating. Hopefully lowering the Steroids will help.
Of course, Luciana and Adrian are sick with runny noses, coughs, and just feeling lousy. And of course, as much as I avoided them all weekend, I got sick too. I have a really bad sore throat, runny nose and just feel awful. The doctor thinks it's viral, but said firmly to call if I get a fever. Great. Hopefully I get better; I have to rest and drink a lot of fluids to try to get this to go away quick.
Other than that, the week went really well. I have some auctions on ebay of things from around the house to try to raise some money towards the medical and household bills. And I have to say huge "Thank You's" to everyone who is contributing to the "Fundraiser for Sheri's Fund" which is linked on my site, you are amazing thank you so much for your support. I also want to thank a wonderful woman who I met on Free Cycle. I put up an add there that I was looking for a treadmill if anyone had one they weren't using, since I am supposed to be walking for exercise but I'm not allowed in the sun, I really needed a treadmill. Well she emailed me and offered hers and is dropping it off tomorrow morning. I can't thank you enough for your generosity towards a stranger. Thank you to everyone who is supporting us, the meals, the financial and babysitting support, you are all in our daily thoughts and we are so thankful for everything everyone is doing and continues to do. Things are still so tough for us, just because I'm home there's still so much craziness involved with everything from the doctor appointments to the bills, the kids and the cooking. I think the beginning of the year is when things will start to turn around for me recovery wise, when we start weaning off of some of the meds. I hope it starts to normalize by then anyway.
Hey Everyone! I had my doctor appointment today, back to the Monday schedule it looks like. I was in and out of there in about an hour which was awesome. My platelet count stayed where it was from last week, actually I think it was 45 last week and was 48 today. (Really that is no change). But since it didn't go lower, there are no tests to do, just to keep watching the numbers. My skin was a little red today they thought, and they're not happy that it's not evening out by now. They also want to get me off of the steroids as quick as possible, which I am thrilled about. The only reason I'm on the Steroids is because of the skin problems at this point. So they're going to have me go to a Dermatologist and also to get some kind of Ultra Violet light therapy that will heal the skin. They said it's like standing in a tanning booth. I'm all for that, to get off of these Steroids! I can't stand the poofy face. I know I keep saying it, but it bothers me that much.
So Adrian started school Thursday. He was so excited. The poor thing though, they messed up his bussing and sent him to the wrong school! They transported him then to the right school which was good, and he really probably didn't realize what was happening. He had a great two days, loves doing his homework and is happy to be going. There are some pictures of him before getting on the bus with his new Spiderman backpack.
Over the weekend we had some good restful family time. I was a little extra weak this weekend, and had a lot of really bad joint pain in my knees and ankles through the nights for some reason. So the lack of sleep made me extra sluggish. We did some fun low-key things though. We got to make popcorn in the air popper for the first time with Luciana. She was so excited, it was great. Both kids were running around the kitchen like crazy.
Sunday we celebrated kickoff weekend of football! We ate like maniacs, and got to see all three games. I suited up in my Favre jersey and everyone else got decked out in Cowboys (I still don't have any Cowboys clothes... maybe for Christmas I'll ask for some, I feel so left out!) We had fun tossing mini footballs around and watching the games. It felt like a normal Sunday which was just what we needed.
Today I had my doctor appointment and everything looks really good for the most part. The big news is that the blood test they did last week to see what percentage of my blood has become the donors. We wanted to see 100% donor cells and 0 of my own, and that is exactly what we saw! This was good news and everyone is really happy to hear this. As far as the rest of my blood work, my platelets are dropping which is not a good thing. They were at 70 last Monday, and down even more to 45 today. Usually once I reach 30 I start getting those nose bleeds. So we're on the watch now to see what happens. They said that the numbers could be dropping because of the Graft versus Host Disease, but if they continue to drop as of Monday, then they will probably have to check my marrow with a biopsy to see what is happening in there.
We also have lowered my Steroid dose from 60mgs twice a day down to 40mgs twice a day. The reason for lowering it is because my knees and legs have become very weak. I actually made a total fool of myself yesterday walking to the car and literately fell down flat on the pavement. My legs just gave out. Luckily I landed on the palms of my hands (which are now two big black and blue hands). I was okay, didn't bleed but today I am so sore. My arms, legs and hands are just a mess. The doctor was really concerned about the fall, and said it could be the Steroids making me weak.
On a side note, Adrian had his Kindergarten Orientation this morning, so Lucien brought him. He got to meet his teachers and see his new school. I can't believe my baby is starting Kindergarten tomorrow. I had to get all of his paperwork together today, label his backpack and everything and I have to make sure I have fresh batteries in the camera for the morning. He's such a big boy! I can't believe I'm the Mommy of a Kindergartener, where is the time going.
Well I'd certainly say that this was the summer that didn't happen for us! I can't believe its September. Here I am starting to think about changing curtains and decorating for fall, when I really haven't even seen my own house since February when I first got sick and shipped off to the hospital.
The week went well with its normal ups and downs. I had a couple nights of really bad joint pains in my knees and ankles again. It's so severe that nothing, not even my narcotic pain killers can help. Those nights of course I don't sleep at all, so the days are really hard to get through, I'm so tired. My hands are doing better, still peeling but I've been using Eucerin creme and that has been helping a lot. Dry skin became an issue this week, my legs turned to elephant skin out of nowhere. That's the crazy thing about these random little ailments is that they happen so fast and so severe, there's no warning signs. I'm trying to deal with them the best I can as they come. The hardest thing still is my big poofy face. It's even bigger than last week. It's embarrassing for me, so I don't let anyone see me.
There's not too much else going on here. We went through the house a little bit to see if there was anything we could try to sell, or eBay for some extra money. There's a few baby things Luciana is done with that we're going to bring to the consignment shop, hopefully they will sell. For some reason this became the toughest financial month for us. I think everything caught up all these months to now. Example, the mortgage was due today on the 1st, and we have literately nothing for it. At least it's the new month, and hopefully by next Monday we'll have enough to overnight the payment. It's just very scary, I'm always a pay on time person and when it's the bills that really count, I get nervous. The hospital bills are starting to really fly in now too, so it's a stressful week for us just on a financial mental level.
On a good note, the kids are great. Adrian starts school on Thursday. I'm really happy that the bus will be picking him up and dropping him off right in front of our driveway again. I was worried how I was going to get myself to a bus stop to get him, but now that problem is solved. They usually honk, and I can just come out and get him. Luciana seems to be a little under the weather, but not sick. She's not been sleeping too well and is cranky so we're thinking it's a tooth. But man, does she have a nasty cranky streak when she's not feeling right... gee, I wonder where she gets that trait from?
I can't believe another week has gone by! Today I am day 34 already. I had a doctor appointment today, everything looked okay. I'm still waiting for them to call me back about the blood work to see if we are adjusting the Prograf (that the drug that suppresses my immune system). They did tell me to not take another drug today called VFend until I hear from them, because that could be what's making my Liver enzymes be off. But we won't know unless I don't take it to see what my body does, I do need the pill though. So it’s really just a test I think. They also took blood today for a really important test which we will get the results back in about 10 days. I'm anxious for the results; they will show what percentage of me has become the donor cells. What we want to see is 100% and no more of my old cells. This is really important and I think I'll get more anxious as we get closer to next week for the answer.
Other than that, the week had minor complications here and there. My hands feel much better, but now since Thursday they've been peeling. All the skin that was blistered is just flaking off. It doesn't hurt, but it's really annoying and very disgusting. Very. I'm extremely tired, last week I think I did too much. We didn't have a babysitter one night, so I figured I could watch the kids for two hours while Lucien taught - big mistake. I'm completely not ready for that. I just need to make sure I'm covered at nights, because I'm nowhere near ready to handle both munchkin's. I think I'm pretty covered now heading into the fall.. I only need someone to help on Tuesday nights from 5 - 8ish. I can handle the 8-9 hour I think. It's just the dinner hour and the time around it. I have one week to find someone.
I want to thank the wonderful people over at the church. They keep amazing us with all of the help. Last week they brought over a new backpack full of school supplies for Adrian who will be starting Kindergarten (I can't believe it!). Lucien and I were in awe and Adrian is so excited to start school with his new Spiderman backpack and supplies.
It was also the little guys birthday on the 18th, so we had a small but awesome birthday party for him on Saturday. My parents and brother came down from New Hampshire to visit and Lucien's parents came down. We blew up balloons, had a great Barbeque and a wonderful day. I think this is the first year that he really understood that it was his birthday; it's so amazing watching him grow up so fast.
After the party Adrian played with all his new toys, and my parents, brother, Lucien and I tried out the XBox 360 (Thank you so much to the families who pitched together to get this for us, it has been the biggest stress reliever, the best medicine there is!) Beijing Olympic Game - what a riot! We were all rolling on the floor laughing for hours. It was the best night, and just felt like everything was 'normal' for a nice chunk of time.
The weekend went really fast, but slow at the same time. It was wonderful, I haven't had that much fun in a very long time. Now I'm excited for tonight, because we're done teaching a little early, so we're going to put together our coffee table and end tables that we had bought in January and never had a chance to build. I'm sick of tripping over the boxes, and I want somewhere to put my drink in the living room, so I am VERY excited to get these things built. I'll update again during the week, everyone please send out prayers this week that the test comes back all donor cells and none of my old cells. This is such an important test we're waiting for. Again, thank you to everyone for everything that you are doing for us and our family!
Things are puttin' along pretty good. The rash on my hands got better for a few days, then on Friday I woke up with it the worst it's been. It's really hard because I couldn't open pill bottles, cut food, type, anything. It was really frustrating and painful. I used a whole tube of Hydrocortisone cream over the course of Friday and by Saturday morning my hands were much better. I do have a faint rash on my arms that is what they biopsied that I noticed over the weekend started to spread everywhere. It doesn't itch, but it's there. Because that seems to be spreading, and also the mucus on my tongue started to spread to my cheeks and lips, the doctor upped my Steroids really high to try to kick all of this out. I was taking 40mg in the morning only, now I'm on 60mg in the morning and 60 in the afternoon. It is confirmed from the skin biopsy that I have Graft Versus Host Disease, which really is to be expected since my donor was unrelated. But if we stay on top of it, then we should be able to keep it under control. Because I have it, my blood work Monday was a little off, my Liver enzymes were high and my Platelets were pretty low, but they told me that's because of the Graft Versus Host Disease.
Honestly, the Steroids are bothering me a lot, because they make you gain weight first, but mostly because they puff up your face so much. It's really upsetting when you look in the mirror and it looks nothing like you. I know when I stop the Steroids the puffiness will go away, but it's still hard to face people knowing that I look so different. I guess though if I have to look like I do in order to stay home and strong and out of the hospital then that's a fair trade off.
It's so wonderful being home. The kids are just amazing and do more amazing things every day. Yesterday was Adrian's birthday; I can't believe he's 5 years old already. We couldn't tell him it was his birthday though, because he would have been looking for a cake and party. He'll get all of that this coming weekend though. He did love his birthday cards in the mail, he looked at me and yelled, "I got mail?!", he was so excited and made me read him the cards 10 times.
Other than that, I'm still trying to find foods that taste good to me. The mucus in my mouth masks the real taste of everything. Some strong flavors come through, and some things are downright disgusting. Like I can't stand dip, hot fudge, apples, ketchup and a ton more. It's just gross! But there are some things that are so good that I'm just going back to like Salads with Italian dressing, Provolone and Olive Loaf sandwiches on Wonder Bread, steak, sweet corn on the cob, pop tarts and ice cream. It's so random! I keep trying new things, if I don't like it I don't eat it, that's all!
I'm a little stressed too, because starting the first week of September a couple of the babysitters are not able to continue. I'm not really sure what we're going to do yet, because I'm not allowed to take care of the kids until I'm at day 100, and I'm only day 28. I think in two weeks I'll be able to handle Adrian when he gets home from school in the afternoons, but I'm worried about the nights with the baby. I can't lift her, so there's no way I can get her up from her nap and feed her, and I’m not allowed to change diapers, so if I have to watch both kids until Lucien is done working, I don’t know how it will happen. I have a few nights covered, but there's a few that I need to find someone to come over from about 5 - 9 while Luciana is up. I just hope it works out; it's just stressful worrying about how it's going to work out.
Time for some ups and downs, of course. Things were really great the first few days home, and then on Tuesday I started to get some ailments. I woke up in the middle of the night with excruciating pain in my knees. I had read about joint pain, but you really don't know what that means until you're going through it. It had me in tears, no position would help, Tylenol did nothing (as usual), it was awful. In the morning I needed Lucien to walk me to the bathroom, practically carrying me, I just was unable to use my legs. I spent about a good half hour pacing really slow holding onto the bed and that loosened the joints up enough that I was at least able to move around. The pain was there, dull all day, and then got worse at night again.
I also developed this burning rash on the palms of my hands. It made it impossible for me to do anything; I couldn't even open my pill bottles. It was one of the things that I was supposed to call the doctor about if I noticed a rash developing, so I called. They told me first, that the joint pain is very common, and that if it continues this painful then they will give me a prescription for a painkiller or something like that. About the rash, they were pretty concerned; we need to see if that is graft versus host disease or something else. So they scheduled me today for a ...... skin biopsy! Once I heard this I was devastated all the rest of the day, I was a mess.
So Wednesday morning Lucien and Luciana brought me in, and Lucien held my hand while I cried away during the biopsy. It wasn't that bad, but I don't want to do that again anytime soon. They took blood while I was there and gave me the pain killer prescription for the joint pain. Now I don't have to go back until Monday.... thank goodness! Some time off from there will be really nice.
Other than that, nothing else new. Luciana and I are spending a lot of time together. Mostly me looking at her from far away because I still am not going near the kids and if I do, I shower right after. Which reminds me, I want to thank whoever it was that bought me the wonderful shower seat. I had it on my Amazon list, and usually when things ship, I see who sent them. But on that package, the packing slip didn't say who sent it. Whoever you are out there, I can't thank you enough, I use that every day and couldn't shower alone without it.
Alright, I'll keep updating! Hopefully things start to look up a little bit now.