Living It Up In Lincroft
Another few weeks went by all full of complete craziness... seriously it's been a wild few weeks. So I'll start with the medical update. I didn't go to the doctor last week, I missed my appointment. So I went this morning. It had been three weeks since I was there which wasn't too good, I know. We did blood work today, which I haven't heard anything back yet which is usually good news. He reminded me again that in July I have to start getting my immunizations all over again (this is not something I'm looking forward to!) so I said, "Well, that's not until July so let's not think about that yet!" I told him about a light rash I had in between visits, it was on my arms and chest, and was a lot of little tiny bumps, I couldn't see them and they didn't itch so the general opinion is that it was a little heat rash. The good news is that we lowered my Prograf again, now I'll take .5 mg every other day. This means I might be off the Prograf in a few weeks!! Exciting stuff. I go back to the doctor in two weeks now. Hopefully I will handle the lower med dose just fine.
What a crazy few weeks. For starters, the pictures we took yesterday on Sunday. Once a year I make sure we get family portraits taken and we also got Luciana's birthday pictures done in her princess birthday dress! I'm so thrilled with the pics!
Mother’s day was amazing... I woke up in my own bed, in my own house, to my beautiful children... Adrian handed me a little gift bag. I opened it to find a necklace, called the Journey necklace (I'm wearing it in the pictures). Along with it Lucien had helped him write a note "Dear Mommy, This necklace is called Life's Journey. Every time you wear it remember the Journey you've been on, and the Journey ahead and that we need you to help us on our Journey. Love Adrian Luciana and Daddy" .. It was SO sweet. The note Adrian wrote, made me love it and appreciate the meaning so much.
That's how the week started... then it all tumbled down when our central air stopped working. We had to wait a week for it to even be looked at! So luckily we have a wonderful handy man (if you need his number let me know!) who was kind enough to come over to put up ceiling fans in the kids bedrooms until the air was fixed. So they came to fix the air...... and the total price came to just under $1000. Yikes. So we did what we could, we fixed part of it but left the rest to be fixed when we can pull it off. So right now we're lucky it's not scorching outside yet, but at least the kids have ceiling fans in the meantime!
Other than that, I don't want to harp on the negatives; I'd rather share the positives. I decided that for my birthday I wanted to do something for me. Years ago I was a fairly talented artist, mostly with pencil and watercolors. So I decided I wanted to get back into it, I felt I needed something to express my creative side a little and as a relaxing activity. I've finished a few new pieces, and I think I'm slowly getting my hand back into the groove of things. It's exciting and I'm so happy that I made the plunge into studying art again!
So this coming Saturday is the fundraiser for the Smile Forever Foundation, who helps NJ families afflicted with Cancer, Autism and other disabling diseases. Please come out and support a good cause! This is open to kids of all ages, is a completely family friendly event. Lucien and I will be performing the opening act as well, so please come on out and enjoy a fun night of the Broadway show Beatlemania!!! Hope to see everyone there!!!!!!
Well I went to the doctor this morning, and looks like everything is looking good! Of course, if there is anything wrong with the blood results he said he would call me later, so I hope the phone doesn't ring. I showed him a little mole that is starting to grow, because I had never noticed it before. He said he'd like me to see a dermatologist, and that since I had Leukemia I should plan one seeing on once a year from now on. (I like that he's thinking ahead, it feels promising!). So the appointment was mostly uneventful, the way it should be. He did get a little upset that I was in the sun this weekend and said he has to tell me firmly no sun... I guess that was wrong of me. I just miss the sun so much! But I need to start listening... He also said that in July when we reach the one year of my Bone Marrow Transplant date, then we will have to start all of my immunizations (which were all wiped out with the transplant, that's why I have the immunity of an infant). I literally have to get every immunization again; diphtheria, tetanus, Haemophilus influenza type B, Streptococcus pneumoniae, Poliovirus and influenza (annually).
I got home and was SO exhausted; I really needed to go back to bed. Lucien was moving a plant on the back porch and I went to tell him I was home. Wouldn't you know, I closed the door behind myself and yeah, we were totally locked out! Luciana was in the living room watching TV and we were locked outside with no key. So Lucien tried to get the door open (with no success), and I walked over to the church, the ladies in the parish center were kind enough to let me call Lucien’s parents (they have a key) but they couldn't help because they live an hour away. So they called the locksmith to the tune of $90 later to get back into the house. Lesson learned. That was a very expensive lesson straight out of the grocery money! Smooth move on my part.
Anyway, the weekend was amazing. We did something we've never done in more than 7 years; we took a personal day on Friday. We spent the whole day in New York City, which was fun because I've personally never done the touristy NY thing, we're always performing or working and there's no time. We had lunch, then went to some of the shops. We hit up the Hershey shop, and the M&M superstore. We are huge M&M fanatics, so we loved, loved, loved that. We got the kids some little matchbox cars named after different chocolates it was pretty cute. We went to Colony music store which had the most amazing selection of sheet music, Lucien took forever, he was like a kid in a toy store. We went to the American Girl store since we were there, to pick up Luciana’s birthday present that everyone is chipping in on. She's getting the Bitty baby twin, so cute it looks just like her!! The store was amazing, I felt like a little girl in there... so amazing. We walked in Times Square, and just took everything in.
The night ended with seeing Chick Corea and the Five Peace Band in the Rose Theater at Lincoln center. We had great box seats (since I can't sit too close to anyone due to germs and my low immune system still). The show was absolutely amazing, Chick was great as usual, and I loved the drummer’s style, it was great. After the show, we went backstage and talked with Chick for a few minutes, and had our picture taken with him. It was amazing to finally meet him, his music has been so comforting to me through this past year, and Lucien has been studying his music for close to 30 years, he was and is Lucien's inspiration when it comes to his jazz fusion. It was an amazing night, and just what I needed to get out and live life.
Over the weekend we spent a lot of time with the kids outside (in the sun, which is what the doctor was upset about). The Lincroft Little League had a parade down our street which the kids loved to see right in front of our house! Then we filled the kiddie pool so they could cool down in the heat. I can't believe it's not even summer yet!
It's been a long time again since I've updated on here, things have been really nutty! I'll start with today's doctor appointment and go back in time.. ! Today went well; my white counts are back to where they should be!!! All the prayers made that happen. I've been so worried about the low count from a few weeks ago, that hearing that news today lifted a ton of weight off my shoulders. We lowered my Prograf - now I'll only take 1/2 pill every day! I am so excited for that! The fewer pills I'm on, the closer I am to being done with this.
The past two weeks has been amazing. We've had such quality family time, which is all I want. Last weekend we had my step sons, Lucien and Justen over. We celebrated Easter with them, they got baskets, and we made Easter cookies all day. On Palm Sunday we got all dressed up and went to Lucien's parents’ house for dinner. We had a beautiful day there, and got to see some family. It was a lot of fun. I really can't believe how big the boys are getting!
Easter weekend was very relaxing. Our tradition is to stay home in jammies just the four of us and do nothing fancy on Easter, and that's just what we did. Saturday night we got out and ran some errands. I was in need of clothes that fit (again). Because I am not yet back to the size I was "pre-cancer" but less than I was in November "steroid weight". I'm almost back into my shape, but not quite. So I had nothing to wear, no pants, no shirts, nothing that fits my current size. So we went to Marshals and I got some staple pieces to get me by. I hate buying clothes for myself; I always end up browsing the children's department!! I browse a lot and don't buy anything, like a quasi-shopaholic... maybe more like a browse-a-holic. Anyway!
Sunday morning we all woke up to our Easter baskets!! Luciana got lots of fun girly things like hair ties, and princess dvds, and an Ariel float for the pool, Adrian got Bubbles, Magic School Bus Books and a word puzzle (for my little puzzle nut that he is). Lucien got a Les Paul book that I got for him and some Snickers, his favorite, and I got my ALL TIME favorite... Cadbury Eggs (Full and mini size), Pink Peeps, and **blush** Yes, I got a Barbie for the pool... I'm such a kid it's not even funny!! But truthfully, I have a blast playing Barbie’s with the kids, it brings me right back to childhood.
The egg hunt was amazing, the kids were so excited, their little faces, running around, I can't believe I didn't get this last year. I was in the hospital last Easter, and I never want to be apart from my children again like that, they were so happy, jumping and yelling for their eggs!
The rest of the day we went outside to get some landscaping done. Well, I'm not supposed to be in the sun, or get close to dirt or plants... okay, so I didn't listen to any of those rules. (I did wear a hoodie though, so my head didn't get any sun). Lucien did all the mulching, weeding, and heavy stuff. I started out by pruning the bushes... but all who know me know I do too much. I pruned to my heart’s desire! I LOVE WORKING OUTSIDE, so I really took my time and did a great job. Was I done? Nope! Then I went over and laid some stepping stones in the rocks around the pool, which was leveling and digging and dirt and worms ... yep, everything I shouldn't have done. But I did it all with big smile on my face to be digging my gloves into the earth. I loved every second! Then Lucien and I put the kids to bed, pigged out on Easter candy and watched King of Kings... classic.
Fast forward to today... I AM SO SORE!!!!! I can barely walk; my thighs hurt so much, my hands hurt from the pruning, UGH! And forget bending over to pick anything up.... OUCH!!! I guess my body just isn't used to doing these things... and lesson learned, I have to take things in stride, and rebuild my strength... trust me, lesson learned!
Well it's been a while since I've updated! Last Monday, I had my normal doctor’s appointment, went through the regular blood work and all that jazz. But that night at around 6, the doctor called and said that he didn't like the results of my white count, that they had dropped by about half of what they were two weeks prior... which is not good. At all. So instead of waiting two weeks to go back, he said he wanted to see me in one week, We left it at that, but Lucien and I were on complete edge all week wondering why the counts had dropped, and if they were still dropping... two questions which I still don't have answers to right now.
So I went again this morning, just had blood work done and left. So I'm really on edge now, waiting to see if the phone is going to ring or not, and boy I sure hope it doesn't. I'd like to know why the white count dropped though, maybe because I'm still sick with this head cold. I'm not sure, but it's not a settling feeling. We're so on edge to see what happens, but trying to remain hopeful that things are okay.
So that's really about it for today, things were crazy only because of our nerves about my blood counts, but Sunday we had a wonderful family day... it was absolutely fabulous just to spend the entire day as a family. Now I think I'm going to decorate for Easter! I'll update if I hear anything about the blood results!! (But I hope I don't hear anything!)
Ooohh... intriguing, I'm updating on a Saturday morning when I'm usually guzzling coffee and watching garden shows on HGTV...
I have to update though, I got some pictures to post and some stories to tell! First off, I have to say, I'm so sick right now! I was up coughing all night, can't speak a word because my voice is history from coughing, but I really don't care and know I will get better soon. Life is too good right now; I know I'll get over this cold quickly.
So last night, my best friend Mya, came to the school PTA casino night with me. Lucien couldn't come because he had a Beatlemania show in Wayne NJ. The tickets were donated to us to go, so I asked Mya to come with me. We got all decked out, high heels, party dresses, shawls... all done up and ready to roll! It was so much fun to get all dressed up, what a great feeling! So we hit the road... a little too early of course... so we found a diner and parked out there for a minute.. ya’ know, I like to be on time... but not too early either.. (This I inherited straight from my parents!). So we got there and Wow, the country club was beautiful.
So we walked around for a while, Mya was starving so she was on a mission for the spring rolls to come by, which they did occasionally. I figured out that if I stood right next to the kitchen door, I could grab off the tray before the waitress went out and the food got all breathed on (I'm still not supposed to have buffet or food that's out). So I stalked the kitchen door for a little while.
Okay, so we got our chips which were given to us with the tickets, and we hit the tables!! It was so much fun since it wasn't real money. If we happen to win chips, then we'd cash them in for tickets towards the 100 gift baskets that were there! Mya did AWESOME, that girl can gamble man, she did great. I only tried Roulette... I played Lucien's favorite number, 14, twice... and hit it right on twice!!!!! I've never gambled in any sense of the word... so that was so cool for me. So we won enough chips that we had like 12 sheets of tickets or something like that.
Then we had dinner, the country club was really accommodating to me, and made me a plate of food in the kitchen, since I’m not allowed the buffet. They brought it to me at the table and made sure I was comfortable. I can't say enough about how wonderful the wait staff was to me. Dinner was awesome, and then we gambled a little more. Then... we hit the baskets!! I wanted everything, there was a Pool Opening, A Coach Bag, Tiffany Earrings, an American Doll, A Disney Trip for Four.... I went around like a mad woman; I wanted to win SO BAD!!! I never win anything!
Sadly, one by one, a hundred baskets got raffled away to happy, jumping, smiling people, while I watched the Coach Bag go, the Pool Opening Go... everything I was wishing for. Then Mya and I were like, "Okay, so we didn't win anything, at least we had a good time." Then they announced they were going to raffle the super 50/50 winner. Mya and I had split a ticket.. so we got our ticket out and were staring at it... then we heard... "The winner is, Mya and Sheri......." WOW!!! We JUMPED UP; she was in complete shock.... I grabbed her shoulders and screamed in her face... "Dude!! We won!!" and we hugged for like EVER. We won a BIG (seriously like, a huge cardboard check) for $5800, which we're splitting, we each went home with $2900. We were in SHOCK, everyone started hugging me (which I'm not supposed to do, ah well!) and everyone was so excited for us. What an incredible moment. I still can't believe it.
On the way home, Mya summed it up in the most amazing way (as we were driving past this awful stench of a dump.. ugh!) She said, "Sheri, just think where you were one year ago today." That thought was amazing. Last March Chemotherapy, a poor diagnosis, to one year later, the grand prize winner at a function like this... I never dreamed I would be living my life again so quickly. I am so thankful for every minute of every day, and I am so thankful that we won such an incredible thing last night.
All I can say is that I am bringing my family to Kohl's tonight, and getting everyone their spring sneakers.. : ) That means the world to me.
Another weekend gone by. Things are okay, although everyone is sick. The kids are both sick, I think it's just that they both have little colds, and nothing more. But it's a pain because I really can't take care of them when they're sick, it’s way too risky for me. If I catch even the littlest cold, it could turn into something more severe really quickly and who knows what could happen from there. I feel so bad when they're sick, and I can't just hold them and comfort them.
The weekend was a lot of fun; we had Lucien and Justen (my step sons) visiting for the weekend. When we have them over is the only real time that we 'take off' from working, and really just lounge out and play video games and get nothing done - it’s great. We celebrated my father in laws birthday Saturday. Here’s me in my fantastic apron baking brownies for the kids. (I got laughed at a fair amount for my apron, but I like it and that's all that matters!)
We played Xbox most of the weekend. Sunday morning I got up really late out of bed, came downstairs and fell asleep for another 3 hours in the living room. I felt bad that I didn't get to game with them in that time, but I was exhausted for some reason. By the time night rolled around, I couldn't even help give the kids dinner, I was so exhausted and really not feeling good at all that I was stuck on the couch. We watched the HGTV Dream Home Giveaway, but didn't win... ah, next year I guess.
I am thrilled that we finally have a gate across the driveway. We really couldn't afford it, but we didn't have a choice. If we wanted to open the pool this year, we needed a gate up to meet the pool code. We did have help though paying for it; otherwise I really don't know how it would have happened. We also have a student of ours who offered to help us building a garden wall around the pool to keep the rocks surrounding the pool. This is something we should have done 2 years ago, but ya’ know, with the year we had, there was no way. Lucien's way to busy juggling the kids and work and the house and everything, and I'm too weak to be of any help, so he offered to help, which I am sooooo thankful for!!!!!
I can't wait for the nice warm weather to come around, even though I can't be in the sun, I can sure sit in the shade and soak in the fresh air, and just enjoy the simple things. That's what it all about when it comes down to it. Life is amazing – especially with my new found love – the FAUX HAWK! I am loving short hair, it’s actually very hard core rocker if you style it right!
One Year Anniversary of Diagnosis
Today marks an important date for me, today is the one year anniversary of my Leukemia diagnosis. One year ago today, I was rushed to the hospital in north Jersey, and admitted on floor 4, the Bone Marrow Transplant floor. It was one year ago that our lives changed forever, I was whisked away from my children, my husband, my home, my life, and introduced into the world of blood work, gruesome procedures, chemotherapy, hourly temperatures, endless doctors and nurses, and hours of loneliness, helplessness and silence.
It's amazing that here I am one year later, sitting in front of my computer, All My Children is on in the background, Luciana is napping upstairs (a little under the weather) and things are crazy, in a great way. Life is almost, dare I say normal. Almost. How ironic that our first students today are two children of a nurse who administered Chemo to me during my treatments. Now today, she'll come in with her children, we'll have small chat, laugh a little and the day will continue. It's amazing to think, how much my life has changed in this year.
But, things are so exciting right now. There is this wonderful foundation based out of northern New Jersey called the Smile Forever Foundation. They financially assist families and individuals who are fighting cancer and autism. The director of Smile Forever is a friend of mine who I met online during my hospitalization, who underwent a Bone Marrow Transplant 3 years ago to treat her Leukemia. Today she is doing amazing things, directing this wonderful foundation.
I am very excited that we will be performing with Beatlemania at a fundraiser concert event in May. It will be a wonderful event for the whole family, so please tell all your friends and family and come out and support this wonderful cause! There will be lots of extra things going on which I will continue to update here. But remember to mark it in your calendars!!
Well, spring is almost here! Or so I thought so until we got blasted with that snow storm last week! What a pain the snow was, we have nowhere to put it when it comes like that. But Lucien got out there and shoveled like a mad man and all was well. He even found a few minutes to make himself an igloo! Luciana wasn't too thrilled with it, but she's hard to please : )
I was supposed to go to the doctor last Monday but got canceled because of the snow. So I went today. I couldn't believe I dropped another 5 pounds, which actually they are starting to wonder why I'm still losing so much weight, so I guess we'll have to keep an eye on that. My blood results looked good from three weeks ago, and I haven't gotten any phone calls about today's results, so that usually means things are good. The doctor did say I was doing great, and to keep up the good work, which is what I always want to hear. We're not going to lower the Prograf again just yet, he wants to lower it really slowly, which is fine. Whatever is the safest way to go, I'm good with.
This weekend was warm enough that we were able to get the little ones outside for a little while. It was perfect; there was no sun so it was safe for me to be out without searching for shade. We got the kids bikes out and let them go up and down the driveway. Luciana will be 2 in May and this was the first time she's ever gotten on a bike. Actually, this was the first time in about 4 years that Adrian rode a bike too. It was so amazing to see their little faces having so much fun. Of course, we were very overly protective of them and hovering over them because it is so unsafe back there in our pavement jungle. As mostly everyone knows by now, my ultimate dream is to get grass back there for them to be safe and enjoy the outdoors. It's not fair that they missed a whole year of outside, and summer and all those simple things that children should enjoy. I'm determined to make it happen for them, to give them a safe place to run around and learn and grow in. They need that in their childhood.
I hope everyone is doing well, and enjoying this warm weather. Spring is almost here, and I think it is the most promising season, a season of new beginnings, of hope and of living life to the fullest!
I hope everyone had a great weekend. I know I sure did. We did nothing but spend family time together, and it was wonderful! Luciana might be getting close to potty training, so I was so excited when a mystery person left $35 worth of Target gift cards in our mail box last week, Thank you whoever you are!! I was able to use that to get her a little training potty as well as some household essentials too, like c'mon, you can't beat Targets price on Lysol disinfectant spray! Anyway, so part of the weekend Adrian tried to teach Luciana how to use the potty, it was really cute, so of course I have some embarrassing pictures of them for that... lol
And my really exciting news.... the No Rest music video from Lucien's album Deal With It is officially released today and all over the Internet!! So far, I've found it on YouTube, Vimeo and Metacafe. This is the fun part for me is seeing where his record company puts him all over the Internet. It's so exciting!!! It was super fun to shoot the video, and now it's just as exciting to see it published! Enjoy everyone!!!! and make sure you rate it, leave a comment, and send a link to all your friends to check out! Here are some screen shots of the video, I’ve loving it!
Happy Friday everyone! There's so much going on! I'm so excited for the release of our latest music video. It was so scary heading into it, because I'm still not 100% back to what I normally look like, so it took some heavy makeup and practicing in the mirror to make sure I was ready to perform on camera.
Lucien and I headed to the editing studio Thursday and Friday mornings to see how everything was going, and we are so excited for this one to be released. I think we'll go again Sunday for the last editing session then looks like the No Rest video will be released early next week!
This is really exciting for me, and I had to come on here and tell you all the fun news. It feels SO unbelievably great to be getting back to performing, it's the most invigorating feeling, and I didn't realize just how much I missed it!
Hey Everyone! Happy Valentine’s Day to everyone! We haven't celebrated it yet; I think I'll send Lucien to Target tomorrow to get a heart of chocolates 75% off!
I had my doctor appointment today, bright and early...! At least I knew who my driver from the medical transportation company was because I had him a few times now, so I was comfortable to sleep on the way to north Jersey. Everyone in the office at the Cancer center today was in a really good mood and all smiles, which was nice, cause I was pooped and wanted to be in bed! So I cheered up and was joking with everyone... it was fun. They asked me to wait around to see how my blood results were, and turns out everything looked really good! The white, hemoglobin and platelets were all right where they should be. That is really good, because that means that my marrow is functioning and making blood like it should be. Awesome, awesome. Last week they did the test to see what percentage of donor I am, but those results weren't back in yet. The great news is that we're going to start lowering my Prograf. That’s the med that makes me have no immune system, so I am really happy that we'll start lowering that. I take 2 mgs a day right now, and starting tomorrow I will lower to 1.5 a day. And with that the doctor said that I am doing a great job!
He was a little concerned about the reddish dark circles under my eyes, until I explained to him that I was shooting a music video yesterday and had to scrub off my eye makeup... I wonder how many times he's heard *that* excuse?? I'm guessing..... once!
We have finished shooting the video for No Rest which is reallllly exciting! We can't wait to see it done. We had a blast shooting, we really had a hard time holding back laughter we were having so much fun!
Hey Everyone! My appointment this week went pretty good. I've lost 10 pounds since I've been to the doctor which is about 4 weeks (way too long! I should go every two!). Everything else went pretty well. My potassium was on the high side, so we figured out what foods in my diet are causing that which is tomato soup and soy sauce... the only things I can get down right now! They told me to keep eating them anyway, because they'd rather see my potassium high that me to not eat. The other news from there is that I cannot dye my hair pink like I wanted too! I'm upset about this, but they said it could trigger graft vs. host disease again, and I do not want to go through that again! They told me to stick to wigs, so that's the plan!
Things are, as usual, crazy here. We're still trying to catch up financially, and it just seems we can't get there. There's always something going wrong. This week my printer bit the dust. Well, I use that every day for work, without a printer, I can't invoice any students, or print paperwork or anything. So I had to find an affordable solution which nothing is affordable according to our nonexistent budget. I keep forgetting that although I feel back to normal, I am not even close and I need to calm down and un-stress about things like this. I'm trying to, when I look at the kids, and Lucien when he's sleeping at night, those are special moments that really hit me, how lucky I am to be back home, and how lucky I am to feel like my normal self - as stressful as that can be!
This weekend we had a photo shoot to launch Lucien's new website look, usually the record company updates his website just prior to a new release, but this time it’s a re-launch of last year’s album Deal With It. So they ended up talking me into having photos too, and I'm so happy with their turnout! I'll post some here, of me with my orange Gretsch guitar, but check out Lucien's website to see all the new pics! I'm really comfortable now with my hair, I actually love it! I'm looking forward to this weekend too, because we're starting the video shoot for No Rest (from Lucien's album Deal With It). This weekend we're starting shooting for that, and the video should be completed in a few weeks and then all over the web and TV. It's exciting, and hopefully is a sign of things picking up in a positive new direction for the year!
Hey Everyone! Well I didn't end up going to the doctors yesterday, but I called and he said that he would call me back to reschedule later this week and not to worry about it. The only thing new around here is that I hurt my mcl ligament right above my left knee. It happened exactly one week ago, I woke up and was in a ton of pain! I limped around for a few days before finding out that it’s a ligament injury. From what I understand, the reason I got it was probably from trying to do too much too soon on weak leg muscles. Leave it to me! So now I have a knee brace, and have to elevate and ice it every night.. Not to mention that I'm limping around... always something!
On the brighter side of things, Lucien finished the waiting room makeover for me this weekend. It looks so amazing, and just brightens my day to see the new color on the walls, I love it!
The kids are great, Luciana is saying so many new things, like "I'm sorry" "bless you" and "Ba-bie" (when I gave her a Barbie to play with!) She's something else. And Adrian was really funny with the painting going on; it must be really exciting for him too to see the new look after all these years!
Speaking of a new look, this is the first week that my hair is long enough for me to wear it out without a hat or a wig. Everyone says they love it! And I do too!!
Hey Everyone! There’s not too many updates right now, because I didn't have an appointment today due to the holiday. The last two weeks have been okay, I'm still dealing with the major pain in my fingers, especially with all the snow we're having – the moisture seems to be affecting the pain. And I'm still dealing with the ultra-puffy ankles and extreme tired-ness. Today I tried to get up but had to go back to bed I was so tired. I didn't get up until 12:30 in the afternoon, which was scary because we had students coming at 1! I managed to pull myself together but it's been a tough day to get through.
Last weekend was really exciting for me. Lucien asked me what would make me really happy, since we were heading towards the one year mark of diagnosis. I knew right away what I would love, and that was to finish painting and decorating the foyer, waiting room and downstairs bathroom. So we painted the foyer a deep gold color, and I decorated it with some iron pieces like a table and a candle holder that I had in the bedroom. It's so pretty and inviting now! We also did the downstairs bathroom a deep red color. I absolutely love it! It's a shame I don't use that bathroom though because it's considered a "public bathroom". So I have to enjoy it by standing outside and looking in. Works for me! Next week Lucien is going to paint the waiting room for me, I'm so excited! We even sold our old waiting room chairs and got a great deal on blemished black leather chairs from a hotel supplier. So the makeover is costing us nothing, except maybe a gallon of paint. It's amazing, I feel so fresh by looking at the new decor, it's completely a new beginning for this year!
We had little Lucien and Justen this weekend for their visit. We had a blast playing Rock Band 2 for three days straight! We actually beat the game which we were so excited about! We were all sore from playing for so many hours, but it was so much fun! Luciana also slept in her little toddler bed for the first time. She was so cute, she didn't move *at all* she was so afraid. When we went in her room after her nap she was laying there in the same spot and said, "Help me!" It was precious!
Everything is so exciting right now, I mean, it's just exciting to wake up in the morning and know that I have a full day of work ahead of me. I look forward to answering the phones and doing my job, working with Lucien's record company again as we prepare for photo shoots and video shoots coming up in the next few weeks. Yeah, I'm exhausted and worn down and dealing with my joint pain and everything, but my excitement to live my life again over rides all of that. The support from *everyone* and the kind words from our students week after week, really keep me going and put a smile on my face. And Adrian and Luciana are so amazing, their little faces are so beautiful and I just want to stare at them and sit with them all the time. They are my two little guardian angels, and I look forward to watching every second of them growing and becoming the amazing people I know they'll be. For all of this, life is wonderful and it can only get better and better from here.
What another crazy week! Last Tuesday, Luciana tripped on a toy in the living room and hit her head on a coffee table. She had a really big wound that kept bleeding no matter what we tried. There was a nurse here at the time because her son was taking a guitar lesson, and she tried to butterfly the cut closed. It was in Luciana's hair line though, so that didn't work. And every time she cried, it would start really bleeding again. So I called my friend Mya, and she came right over to look at it. She thought it could use 2 or 3 stitches, so off to the ER we went! Of course that's the last place in the world I should be is an ER full of sick people, so I wore my mask and gloves. The staff there was wonderful and got us right into a private room and looked at the baby right away. It ended up she needed 6 stitches! They put the dissolvable kind which was awesome, and were really good with the baby. She didn't cry at all, she was a real trooper. I don't know what I would do without Mya, she's always there when I'm in a pinch, she's the best friend I could ever ask for.
The week went on pretty uneventfully thank goodness! We spent the weekend taking down the Christmas decorations. It didn't take too long, which was good because I was really worn down from the week and needed to rest a lot. Lucien had to keep yelling at me to get back on the couch and stop doing too much. It was really nice to see the house go back to normal!
I had my doctor appointment Monday morning. MAN is it hard getting up at 7:30!! The appointment went really well though, he said that all the new problems I'm having are to be expected with stopping the Steroids after being on them for so long. I've had swollen ankles, severe arthritis pain in all of my fingers at night and every morning, and a complete loss of appetite. The appetite is a lot like being pregnant, certain foods that I usually love are disgusting! And then I crave other certain foods... but anyway, the doctor said this was all normal. The only thing we're going to watch if it gets worse is the finger pain, it does really interfere with day to day activities, I can't even play guitar right now. Everything else looked really good though, and now I go back in three weeks.
I hope I have some more quiet weeks ahead. Lucien and I have a lot of projects we're working on right now though, so work is absolutely nuts. We even have a video shoot scheduled for a few weeks from now as we resume the Deal With It Tour, there are a few videos that were planned and put on hold when I was diagnosed, that we're scheduled to resume with now. It's really exciting, and we're really happy to get back to work 30 hours a day like usual. The only difference is that I have to sleep extra hours now to keep up my energy, but it's worth it. That and the chocolate flavored Ensure Lucien bought for me, I think I'll be ready to go into this crazy year!
Merry Christmas everyone!! This is the longest I've ever gone between updates, so there’s a lot to talk about! The week before Christmas was nuts getting our house ready for guests. I couldn't travel to New Hampshire this year, so my Mom, Dad and brother came to visit us. They got here late Tuesday night and that was the kickoff of Christmas! For the first time in history, we only worked Monday and Tuesday last week, and took the rest of the week off. It was so worth it!
Christmas Eve was a blast. We went to Lucien's parents and exchanged gifts. This was the first year that I got to experience the Italian Fish Dinner on Christmas Eve. There were 5 fish dishes throughout the dinner; it was so different and delicious. The kids got huge magnadoodles, which they love, Lucien got a nice shirt, and I got leopard print Crocs! They're by far the coolest I've ever seen!
At about 7:30, we started to hear sirens outside in the distance. Everyone started running around getting their coats and hats on, because this meant Santa was coming by soon with the fire trucks! I was like a 4 year old; I was so excited to see this. I was jumping up and down, screaming and waving.... it was kind of pathetic, but so much fun! Of course, they sped by at about 50 miles an hour, we heard a "Ho Ho Ho" and that was it, he was off! (I guess to start delivering presents!)
We headed home, singing the Chipmunks Christmas the whole way! Once we got home we put out some cookies and milk for Santa, and Adrian wrote a really sweet letter to him too.
Christmas morning was the best! We woke up, got the kids and came down to open stockings! I got lots of makeup that I needed because my makeup was a year old, I didn't wear any all year, and some other really cool stuff. We took a break for breakfast and then dove into opening! We went steady opening gifts for a few hours. The kids had a lot of presents to open since we had donations from Adrian’s school, the church and friends and family even sent some extra gifts for them this year. I was so happy for them to see their excitement over all their new clothes and toys. I was especially happy for all their new clothes since they were both outgrowing everything they had.
Lucien and I got jammies, some books and dvds. I got some jewelry that I had been eyeing up at the Fossil outlet when it opened, and a new bathrobe because I had forgotten my old one at the hospital, some bath goodies, a pair of clogs, canisters for the kitchen, a toaster (which we needed So Badly! Thank you Aunt Carole and Uncle Skyp!!). Lucien got some converse, a new cordless drill and typical stuff like bracelets and a belt. Then everyone started acting funny, and the next thing I know, rolled around the corner into the living room comes a purple Marshall Amplifier half stack!!! I had been eyeing this up for years!! I needed an amp for the tour coming up this year (the Deal With It Tour), and I was going to use one of Lucien's old amps. But boy was I floored when I saw this! It's limited edition, Marshall, and the amp of my dreams! This was the best Christmas present ever!
Someone gave the family Rock Band 2 for our X Box 360. We were skeptical at first if we should keep it, because usually we want nothing to do with music related things out of work hours, we want football and different things because music is work for us. But since my family was here we decided it would be something 4 players which is hard to find on X Box. Well, it turns out that it was a blast to play as a group. I was the lead singer, I made my character with short pink hair, Lucien drummed, he has a lot of fun drumming and his character looked just like him with the dent in his chin and everything! My brother Scott was "Spanky" the guitarist, because that's what he plays at home on his game, and Dad was "Bizarro Bob" on Bass, and did an awesome job following the colors on the buttons. We had fun with trying to earn money and buy new instruments and clothes as well as trying to earn new venues to play. It was a blast!
The whole week was so much fun; we had some crazy moments for sure. Like for lunch Lucien surprised us Friday with a burger the size of Adrian's head, it was huge! We all had some laughs at that. We watched some movies of course. One was Silent Hill, which was about a witch that ruined a town or something. It was the strangest thing, especially since the DVD kept getting stuck at the most important part... (Next time clean your fingerprints off Scott!) Just Kidding! But the best part was the next day when Dad, Lucien and I used some Barbie's and a candle to re-create a scene from the movie and taped it as a mini movie! Ah, good times!
It was just a fantastic way to wrap up this crazy year. Christmas was always a big deal in my family, we always start talking about plans in August, and we’re absolutely nuts and insane about the whole thing. But this year was that much more special, because when I was spending all those hours and days alone in the hospital, it was thinking about Christmas that got me through. My goal was to be home by Christmas, with my family, with my children and I was rewarded with that, and then some. I could never have asked for a better time, everything was just as I wished for all those months. And now, we're heading into the New Year with high hopes for life. We're reaching high this year, and we'll get there. We're so determined to do everything and I know we'll get every single thing accomplished. This year we're cleansed of the old and looking forward to the new. We've shed old skin, old relationships, stale partnerships and time of sickness and we're determined to enjoy a healthy, happy new year with our Tour coming up after a year of delay, a new album coming out in the spring, new business ventures, new partnerships and a new way of life. We're excited for 2009, looking forward to a wonderful year professionally and personally. I think after the craziness, we deserve just that, and with the drive inside both Lucien and I, I know we'll have a wonderful year. Because of all the help, support, donations, gifts and open hearts you've all offered through this year, we were able to maintain a positive outlook. We have been able to look forward to the bright future instead of dwelling on the things we've gone through and are still living through every day. We do it, live it and look forward, thanks to all of you, we love you all!
Have a merry, wonderful New Years, and let's all hope and pray for a happy, healthy year to come for everyone. Happy New Year Everyone!
As Lucien has been yelling from the rooftops, 2009 is gonna shine!!!!
Well it's about time for an update I think! Sorry I missed the normal Monday update, but I was so tired yesterday, I spent a lot of the day in bed resting. I did have a doctor appointment yesterday in the morning. Lucien and Luciana came with me to bring a tray of cookies to everyone in the office, and of course a special bottle of wine for my doctor for Christmas.
The appointment went very well, and we got the news that we were all hoping and praying for... I am back to 100% donor cells! He said though that this is something we will be watching constantly for a while, but at least it went in the right direction right now! This was the news we were looking for heading into the holidays. We had a great visit with him and ended up talking about Christmas traditions more than anything else! He did tell me to be careful with the Christmas Eve Italian fish feast, so I'll make sure I stick to safe fish! I asked him if for this time we could stretch my next visit to 3 weeks instead of 2 because of the crazy holiday schedule, and he said that we could as long as I called him if I noticed anything different! I was *very* happy about this!
Over the weekend we had Loosh and Justen over to celebrate our Christmas with them. Saturday morning I did a little photo shoot with them near the tree all dressed up, then Saturday night we had Grandpa's famous Italian sandwiches for dinner, then opened presents! We gave the boys all football stuff of their teams, Giants and Cowboys, which they love and have fun with. The boys gave Lucien a really cute ornament for the tree, and they gave me (with Lucien (Daddy's) help) my very own personalized Cowboys jersey so I'd have it for Sunday night’s game.
After our mini Christmas celebrations we watched Rudolph and Santa Claus Is Coming to Town. Adrian is still afraid of the Bumble; the poor thing! Luciana loves the movies and sits through them both mesmerized.
On Sunday little Lucien and I made sugar cookies and gingerbread girls and boys. He loves helping me in the kitchen, and he really does help out a lot! He's 14, I can't believe what a little man he is. Sunday we all spent playing the X Box, we have such a good time playing that, its fun when we play a game that we all can compete on. It makes for some funny moments.
This week should be pretty uneventful, hopefully. I've been very, very tired, to the point that if I don't sleep in until 10 or 11 every morning, I just can't make it throughout the rest of the day. So Lucien has had to do all the errands and banking and stuff, because I just need to rest in the mornings. But anyway, other than that, everything is good. I'm of course wearing my new football jersey as much as I can this week to support the boys! I love it so much, it even has my number “84” for the year I was born! Quite a win we had Sunday night I must say! I've said it before, and I'll say it again..... How ‘bout them Cowboys!
Ah, the most wonderful time of the year... bitter cold, 10 layers of clothes, wet socks... it's a blast! I do love this time of year though. Not too much went on during the week, but the weekend was a lot of fun!
I starting making 'test' batches of Christmas cookies. I quickly realized that I'm waaaayyy too weak to make dough, and told Lucien right away I'm going to need a hand mixer if I'm making Christmas cookies this year. So I got a little hand mixer at Target and I love it so much! The cookies came out awesome too, they're cut out as stars and candy canes with homemade royal icing! It was my first time making cookies like this, so they're a little rustic looking. I think they'll look better next time I make them.
Unfortunately, we lost our beta fish, Seaside, this week. I was upset because I had him about 4 years. I had won him on the Seaside Heights Boardwalk and he lived with us a long time. So, Saturday night we took the kids to the pet store to pick out a family pet beta together. We picked out a beautiful purple, red, and blue colored fish and some fresh food for him. When we went outside from the store it had started to snow big beautiful snowflakes! Lucien had Luciana, and I was holding Adrian's hand and asked him what he thought we should call our new fish. Immediately, he said, "We should call him Salmon". And that's his name! Adrian was so excited to get Salmon settled into his bowl and feed him. It's his first pet really, so he can't stop talking about him!
Adrian's school has been amazing through this time, very understanding, accommodating and helpful. They had asked us to have the kids make up letters with some things they would like for Christmas and send them in. The staff all pitched in and collected all these amazing gifts for the kids for Christmas! Lucien went and picked them up this morning, and when he came home with everything, all wrapped and ready Christmas I was overwhelmed! It's so amazing and I'm so excited for the kids for Christmas. I'm so happy they are getting toys, because I wasn't able to afford too many. I got them mostly clothes they needed, some puzzles, books and movies so now they have more fun things for Christmas morning!
His school even gave us a Turkey that we froze until Christmas and a Shoprite gift card which we will use tomorrow for diapers. To everyone over at the school especially Adrian's teachers thank you so much for everything you have done for our family during this season, Adrian and Luciana had just as tough a year as Lucien and I, between adjusting to babysitters, traveling to their grandparents every week, change of routine, not spending time with me for so long, it just makes me want to give them the best Christmas ever! And with everyone's help that we've received, they will have a perfect Christmas.
I also have to thank everyone at the church again for everything you are doing to help us through this time. It amazes me that people continue to open their hearts to us and I will forever be thankful for that, because even though I am sitting in my familiar spot at the desk working, taking care of the kids mostly on my own and seeming to be 'back to normal', I'm definitely not. I just don't want to log on here every week and complain about my ankle pain, or extreme tiredness or any of that, because it's a time to be thankful for the positives. And we would not be able to keep this household running just yet without the help that all of you are continuing to offer. I do still have a ton of prescriptions, medical transportation, and things like that, so we are close, but not quite there on getting caught up. And for all the help, support, and prayers I can never ever thank everyone enough!
Whew, what a week! Or... half a week since I've written on here I think. Thanksgiving was wonderful; it was low key and just a lot of fun. We spent it with Lucien's parents, just the 6 of us. Some family stopped in at different parts of the day which was nice to see everyone, but no one stayed very long. Dinner was fabulous and then we all sat around watching the Dallas Cowboys kick butt!!
The weekend was a lot of fun. Friday night Mya and I played some mad Piñata Garden on the Xbox 360, it was a blast. That game is so addicting it's not even funny! Then Saturday I went with Lucien to Philadelphia where he was performing with Beatlemania. We had a lot of fun, we always do, and it's always fun to see people we don't see all the time.
The two shows went great, but it was a really long day. At least we were home fairly early, 12 on the nose! A babysitter had watched Adrian and Luciana all day, she's great with them, and they love her so much. All Adrian talked about all week was the babysitter coming on the weekend. And Luciana is talking up a storm herself! She's 19 months old and has already started saying phrases like, "It's stuck", "This is down!", "Baby go?" and a few others. She's amazing. We watched Rudolph the Red Nosed Reindeer Sunday for the first time with the kids, and they were both glued to the TV, even though Adrian had a hard time looking at the Bumble snow monster! Very cute.
This morning was my doctor appointment. Lucien and Luciana came with me today. Luciana was afraid that *she* as seeing the doctor, and kept saying "No okay!" when we told her it was okay! We did get good news that at this point there is not only no sign of Leukemia, but there is no sign of the molecular abnormality either. This is major! But we have to keep a close eye on my percentage of me and donor. If it goes to any more than 5% of me in there, then we will have to act on it more aggressively. Let's hope that lowering the steroids will bring it back to 100% donor!!! This week I'm on 10 mg every other day and next week I drop to 5 mg every other day, then that's it on the prednisone!!!
That's all for now, I'll update as soon as we have results on the blood tests they did today!
Happy Thanksgiving everyone!! Well, a day early, but I won't be around the computer tomorrow, so no better time than the present! We have so much to be thankful for this year and so many friends and family to be thankful towards. Thank you to everyone, every single person who has gifted us with your love, support, prayers, time, and meals, absolutely everything. I am thankful especially that I am with my beautiful family for the holidays; to be in our home, living life as close to normal as possible, enjoying every word out of my children's mouths, every little expression on their faces, and the amazing feeling of kissing them goodnight, and seeing their bright little angel faces in the morning. I'm thankful to sleep in my own bed, with Lucien's arms around me every night holding me tight and keeping me warm, his good morning hug when I sleepily come downstairs in the morning and our couch time together every night when we're done working. I'm thankful to be working again, talking to all of my friends, all of our clients, doing the scheduling and phones. It's great to be back to work, and back to life. There's nothing like these simple things, nothing at all as wonderful as these very simple things.
We have no more news from the doctor yet, but I will post on here as soon as we know anything else. I don't go back until Monday morning, but hopefully he'll call before then with some good results. All we can do is hope and pray at this time, and that's all we're doing.
Have a very happy Thanksgiving everyone! Enjoy your Turkey and mashed potatoes, I know I will! I'll just be missing one of my mother's amazing pork pies (mmmmmm!) but I can look forward to that on Christmas!!