journal

Journal

& Updates

November 11, 2009 (Wednesday)

It's been so long since I have updated on here! Things are okay, it's been a little crazy this month.. the munchkins have been back and forth on being sick, which is difficult because I can't go near them when they're sick. It's especially hard when Luciana is sick, which she's been off and on, but this week is the worse for her, she has a fever, runny nose and is ultra cranky... it's hard because I can't wipe her nose or change a diaper (although I've done it in pinch, I put on medical gloves and do it, even though that's a huge risk).

Last week I was pretty sick myself. I started with a really bad cough, which I still have, but it only at night now. I was sleeping most of the day the starting the Sunday after Halloween (which ya have to be pretty sick for when there's 4 kids running around, playing games, being nuts etc). I had really bad chills, and did get a temperature of 99 point something which **thank goodness** went away after a few hours. If that had stayed, I was surely going to have to be admitted to the hospital. I'm still so so so tired, and have the night cough, but there hasn't been any fever since last week.

Monday I had an appointment with my oncologist up in New Brunswick, which went okay. He wasn't too thrilled with the fact that I was sick, and coughing so much, and we had a big debate about the H1N1 immunization... he's not thrilled that I'm not getting it for the kids, but Lucien and I have very strong feelings about the whole thing, and did a lot of research and are very comfortable with our choice. Then came the fun part.. ugh.. they told me I had to get 2 immunizations (childhood ones), then come back next week to get more. SO... I asked if they couldn't just do all 4 while I was there because it's a big ordeal for Lucien to drive me up there on a Monday morning, with all the traffic, it takes us an hour to get there, and we're rushing because we have to get Adrian on the school bus first. So I'm always late. I used to have medical transportation which was so much better, I was there on time, and Lucien could work for the four hours that it takes for my checkups. But we ran out of funds for the transportation, so we've had no choice but for Lucien to bring me, which is a pain, he can't work for that time, and he has to sit with the car running the whole time (so much gas!) to keep the dvd player on so the baby doesn't scream for 4 hours.. good times. Anyway! SO the Doctor agreed to give me all 4 which is a big big big big ordeal (for me). I cried like a baby, literately, it took 2 nurses, it's my biggest fear in the whole world is needles, so I was sobbing, which only made me cough more... when they were done, they were hugging me to try to calm me down, and insisted I drink water before I leave... they must dread when I come in! So after taking the financial and mental cost of them, I now have the immunizations to Polio, Tetanus and Diphtheria, Hepatitis B, and the Haemophilus Influenzae Type b (Hib) Vaccine... yeah... all that.

So, the next day, I get a phone call from the doctor regarding the blood work... this is never a good sign!! Turns out that my Potassium levels are sky rocketed, so high that they are worried about my heart! Now, this has happened once before so I'm trying not to get all worked up over it... but I am getting repeat bloodwork done tomorrow morning to see if it was a fluke or if there's a problem. They said that if it is still high, then I will need to start a medication for that immediately.. (just what I need... more pills, more co pays). I did also have to start taking twice a day OsCal (Calcium with D) to treat my Osteoporosis until the OBGYN decides on a treatment. On the positive side of things, we have lowered my CellCept (this is the medication that causes me to have no immune system) by half! I was taking 4 doses a day and now am lowered to 2 doses a day.. that's the good news.. : )

I will try to update on the Potassium levels and what we have to do for that if it remains high. All I know is I want to feel better, I want to start concentrating on the holidays coming... I can't wait for my family to visit, and for the cozy season to come..

October 12, 2009 (Monday)

Hey everyone! I can't believe fall is here, and the leaves are falling. I can't believe I've been home for over a year, and how almost normal things seem these days.

The Doctor gave me 4 weeks off from going to see him for bloodwork, which is a huge milestone of sorts. I think part of the *real* reason though, is because he is on rounds in the hospital until next week and it's a pain in the butt for him to have to come to my checkups.. haha.. so I lucked out. I'll probably get to go to every three weeks starting next time which still is better than every other like it was.

Last week I had my appointment with the OBGYN. I had a regular checkup, which he thinks will probably come back a little abnormal due to what I went through, but that we shouldn't be totally alarmed by that either, that we should expect it. He was shocked to hear what I went through, since I haven't been to him since right after the baby was born. He looked over my bone density scan results, and started writing all over the paper, circling things and writing notes (I'm assuming this was not a good sign) because then he looked up and said, "You know you have Osteoporosis right?" Wow... what a way to find out!! I mean, I had a hunch that I did, but to find out so bluntly was still shocking. Basically, I have the bones of a 70 year old... so I have to be very careful or I can easily break or fracture a bone. He ordered bloodwork, and when those results come back, we'll put those with the bone density numbers, and come up with a plan of treatment. I think I can't get anything aggressive like Boniva (you know, the Sally Field commercial), since we don't know how drugs like that would interact with the meds I'm already on, so it will probably be dietary supplements, exercise and physical therapy.

Next week I also have to get three flu shots... yay. I'm not happy about this!!!! It's ironic really, that I saved a littttttle money on no co pays for Dr visits for a few weeks, and now I'm going to get slammed with the price of three flu shots. I just can't seem to get financially ahead!!

I have been going crazy selling things on the Internet, Lucien parted with some equipment, and I sold some things we could live without on Ebay which helped to a bill or two last month. It's really rough right now, and we're just trying to do anything we can to pay the bills.. everything from selling things, to extra hours, to cutting services.... even the kids Halloween costumes. We thought of the cheapest thing... rock stars!! Adrian wants to be Ringo, so all he needs is to use one of Daddy's wigs, some drumsticks and he's good to go! And Luciana is going to be a punk rocker, with her pink leggings, beaded jewelry and a microphone, all things we have already! Desperate times call for desperate measures!! But the munchkins will never know : )

This weekend my parents and my brother came down to visit, which was awesome. It was so needed to have a weekend of laughing, gaming and constant fun. What a stress relief to forget about the bills, the craziness, everything. We really needed it. I have a really good feeling that this week will start to bring positive things and be as stress free as possible. Things have to turn around sooner or later, and it can't be any later than today : )

September 24, 2009 (Thursday)

Time for an update! I know it's been so long, but as usual things have been crazy. So much has been going on in life, and medically, so it's really just been consuming so much time to take care of everything around here.

Last month I started getting my immunizations. Since my bone marrow transplant, my blood is actually my donors blood, and has grown from the amount in one IV bag to fill my bloodstream. So, this blood is fresh, I'm basically a one year old (okay, maybe 13 months?). Just as any infant needs their immunizations, I do. And it's horrible!! You'd think that after everything I've been through, I might be a little better around shots... not true! Didn't happen. I am permanently and forever petrified. My doctor actually was very sly with me, and didn't bother to tell me that I had shots until I went in for my checkup, which was great because I had no time to worry about it really. The first three I got were Haemophilus Influenzae Type b (Hib) Vaccine, Hepatitis B Vaccine and Pheumococcal Polysaccharide Vaccine.. and there were tears.. many! I'm at least able to now warn the nurse (although they know I'm coming... I got a reputation!). I tell them, "I need a private area to do this, I need to recline or lay down, I'm going to cry, it's not you, don't stop, just please do it fast and get it over with.." then I cry like a little baby and go home miserable! I had to return a week later to get two more, which were Tetanus and Diptheria Vaccine and Polio Vaccine.. yup, same routine, cry and go home miserable.

I had to also make a separate appointment with my OBGYN, who I haven't been to since after Luciana was born, and I have to bring to him my bone density scan results. My oncologist slipped a little, and said, "I want you to make an appointment with your OBGYN to talk about how to treat your Oster..o.. I mean low bone density." SO.. I take this as ... I think I *do* have Osteoporosis. We shall see, I will be going to that appointment next week. He was also pretty concerned.. and kinda freaked out by the horrible crunchy sound my knee is still making, and making louder each week.. I think he called it a Crepitus sound or something like that.. it's great, he get's all tweaked out whenever I bend my knee... I get a kick out of that!! So unfortunately I am still awaiting answers on the knee, we don't know exactly what is causing the cracking in it, it doesn't hurt, it's just "really not right" as my doctor put it..

Life is nuts! Adrian started the 1st grade, which is an adventure in itself. He has some rocky moments, but so far he's doing much better than he has in the past years, so I do have a really good feeling about this school year for him. Little Diva, Luciana is ruling the castle with a vengeance. Everything is "hers", she's bossy, rude, in charge and a princess all at the same time.. oh, and she's only 2. I don't know where in the world she inherited all that from.. :::bows head in shame:::::

Lucien and I have been working like crazy on his new album EvoLucien. So far, even I'm blown away by it. I'll routinely sit back, listening to play back after a session and just be awestruck by the songs. The artwork is coming along as well, this is a big project for me. It's a concept album, with a 10 page booklet, which is also having a book published at the same time which Lucien is writing. So to go along with all this is a lot of artwork, mostly in acrylic paintings to depict the images he is painting with the music. I'm really excited to see the final product.

We've been really busy trying to clean out, and been selling as much as we can on Craigslist and ebay to try to pay some bills. It's helping a little, but it's a lot of leg work to do that, and so exhausting. I've also decided to try to flourish my side business, which I've had going for a while but not going to crazy with. So to try to supplement some extra income, to pay for some of my meds expenses, I've been putting in extra hours on my pet project... it's called Pick Me Ups. I made handmade guitar pick necklaces, with all different styles of guitar picks, necklace materials, bead work, and everything down to the tags and the necklace fixtures I do by hand. They're popular online, but I never really advertised them until a few weeks ago.. I think this could help a little bit with the extra medical bills. : )

The website for Pick Me Ups is: www.PickMeUpDesigns.com

and they're also for sale here Pick Me Up Designs at Etsy

So, things are moving along, it's been crazy, with all the shots, the knee, the bone density... but at I'm happy to be home and happy to have the opportunity to live this crazy life! I take all of these things in stride, because it sure is a long way from where I was a year and a half ago.

August 16, 2009 (Sunday)

I have only one excuse for not updating this page is so very long, and that is.... that I've been too busy living every second of this summer to the fullest. Against Doctors orders, I am tan, swimming constantly and enjoying the outdoors as much as possible, and it feels wonderful!

July 22th was my one year anniversary of my Bone Marrow Transplant. I wanted to get on here and write an entry about "how far I've come" and this and that, but truthfully I was so busy, I just didn't! One year is a huge milestone, my Doctors say it should be treated as another birthday. The nurses, my friends, my family, our clients, everyone congratulated me on my one year, it was really sweet, and I can't believe it's been that long since I've even been in the hospital! I am down to every other week as far as Doctor visits, which is a nice break in between. But with the one year mark, all of this celebration comes with setbacks and negative points. I have had to go for many "one year tests" (and have more scheduled) from Bone Density Scans to check my bones to Pulmonary Function Tests (breathing tests to check my lungs functioning ability). I am supposed to start getting all of my immunizations again as of last month. Luckily, my Dr has postponed them since anything with needles is a very stressful event for me and things have been very stressful this month as it is, which he could see, so he told me not to worry about them, that we'll start the shots in the fall.

Along with the one year, other problems have occurred, which is to be expected after what my body has gone through. I am officially post menopausal at the ripe old age of 25. While this has been a nice little perk, other side effects come with this since my body doesn't make enough estrogen anymore, like now we are watching like hawks for Osteoporosis, and other problems most women don't worry about until they're in their 50s. At least the hot flashes are over! I haven't had one of them in about a month, so that's very nice since it's so warm now in August! I am having trouble with my knees, which I am going to have to make an appointment with an Orthopedic Specialist (I think that's what it is) and will probably need physical therapy. On top of that, while I am enjoying summer, I did suffer an injury in the pool (karma maybe since I'm not supposed to be swimming???), Adrian jumped on my back, and his bony little knee hit my tailbone full force resulting in either a sprained or broken tailbone (not sure on those results just yet!) - it's painful though!! I'm taking this as a sign of brittle bones and preparing myself for the worst as far as that bone density test goes (I'll get the results on Monday).

About a month ago, I also tested positive for a virus called CMV or Cytomegalovirus. It's a common virus that infects most people at some time during their lives but rarely causes obvious illness. CMV infection can become dormant for a while and may reactivate at a later time. In normal people with normal immune systems, this is no big deal really, but for me, with a weak immune system can quickly turn into chickenpox, infectious mononucleosis or other serious things like that. It was a fiasco getting the medication for that, an anti viral medication that my horrible insurance wouldn't cover. The monthly pills for this virus - $5,000. And I needed them, because otherwise this virus could turn into something more serious very quickly. I did find a way to get the meds eventually, but it wasn't easy! And I'll be paying it off for a long long time, but it sure beats ending up in the hospital again.

Now on to the positives! Summer has been amazing. Last year when I was hospitalized for the whole summer, all I wanted was one thing. To sit in the backyard with my family and watch the kids play. That's all I wanted, and this year, I'm doing it as much as I can! We had my step sons, Lucien and Justen for the entire month of July. It was a lot of fun, we swam a lot, played X Box on rainy days, went to Dorbrook park a few mornings which was fun. We ate a lot, played a lot and just had a lot of fun. In June (right in the middle of the whole CMV diagnosis, I even went up to New Hampshire for a few days for my brother Scotts High School Graduation (this was highly against doctors orders as well, and I was lectured that I had to call and come to the hospital in New Brunswick at the very first sign of fever or infection). It was a wonderful little visit to see my family and cheer on Scott on his big day!

Last week was Adrians 6th birthday party, I can't believe my little boy is growing up! He had a Beatles birthday with a Yellow Submarine cake. He got Beatles sheets for his bed, and Beatles pictures for his room that his brother Lucien made for him, and a cool guitar backpack for 1st grade! He had a great time, and asked me immediately when was his 7th birthday going to be?

Yesterday we went up to Staten Island because Lucien had a Beatlemania show. It was right on the beach, which was great, I was so happy to have a chance to get near the ocean! It's literately been years. We had a lot of extra time to soak in the ocean, check out the street fairs all along the board walk and just hang around. It was awesome to hang out with the cast and crew, they're always the best group to be with. It's really the most fun and completely stress free group of people to be with, they're our extended family really. It's always great to catch up with Alan and Jess, and of course Joe. He's great, just as crazy as Lucien and I with having Purell and Germ X available at all times... here's a classic picture of Joe saving the day with some Purell after Lucien got attacked by a crazed fan.... too funny. We had to wait our turn to get our gear set up on the stage, which kept getting put a little later, here's a pic of Alan, Lucien and Jess that I caught just as we found out we had to wait for Mayor Bloomberg to speak first... don't they look thrilled? It was a classic moment... all caught on camera! Of course the show was flawless and lots of fun just the way it should be.

Life is moving so quickly again, almost as though this cancer never was here and never stole a year of my life. It's also a big part of who I am today, how I live my life, how I approach things I do and how I do them. It has made me soak in my world around me in a new view and with new appreciation. And through all this, is how I sometimes, for a minute, forget that it was ever running through my veins. How it was ready to claim my life, and instead has only made me stronger. I still worry sometimes, as I'm looking at my hands, or showering, or doing my makeup, if it could be secretly building inside me again, preparing for another battle, but then I stop and realize that that's part of it's warplan is the scare tactic - so everytime that thought comes to me, I quickly shake it off and move on with my day, because I've fought the battle before, and I'm not about to waste another minute not living my life.

June 15, 2009 (Monday)

I didn't realize it had been so long since I've updated!! Things are going fairly well, I have been weaned off of the Prograf completely for about a week now, which is really amazing, I'm so happy about that. One pill down.. lots more to go.. ! It's been crazy here. We've been swimming (which is something my Dr doesn't actually approve of, but told me I can still do if I'm really careful, stay out of the sun and tell him right away if I feel anything afterwards like ears, throat etc.) So that's the plan. Of course over the past two weeks, no matter how much sun block, even at 50 spf, that I put on, I got a really nice tan (which is actually not good!). So this morning when I saw the Dr, I just came out and said, "I apologize for the tan, I really tried not to get it!" I mean I was literately floating in the pool under an umbrella.. so .. I don't know how I ended up with this tan, but it sure is even and nice!

Last week I did something else I've been told not to, and that was to go to Adrian's school for the Kindergarten show. I'm so happy that I was able to go, I've never been to any of his school functions ever and he was so happy. Before they started I went out in the hallway where I saw the kids lining up. I saw Adrian walking by and I knelt down, grabbed his face between my hands and said "Look Adrian, Mommy is here! I'm here to see you sing!" and it clicked, and his face changed into a big smile and he yelled, "Mommy you're here!".. oh my goodness the poor little guy, I've never been there. He was so cute, singing the 10 or so songs, then he came and sat with us for the Kindergarten slide show.. it was really cute. Afterwards everyone starting mingling and things got really crowded, so I covered my face and bolted to the nearest exit to get out of the room, and Lucien returned Adrian to his teacher and explained that we had to go because of me.

It was also the St. Leo's fair last week... another situation I should not be near.. but the kids could see the rides from the windows and we could here people screaming on the rides and the "announcer voice" everynight bellowing through our house all night. So the kids knew something was going on. So Wednesday night Amy and Maleah came over and we brought all the kids over while Lucien was teaching. It was so much fun! And not too crowded. Adrian and Maleah were cute, they went on a bunch of rides together, and then I joined them on the Tilt a Whirl. It was a lot of fun. I felt bad for Lucien, so we went back for a little while on Friday night and got to put Adrian on some more rides. It was not the safest situation for me to be in, but the kids had a really good time and that's what means the world to me.

Other than that, we've just been recording a lot for the new album. I've been slaving over getting the artwork ready since I've been commissioned by Lucien to do all the art work which will be a mix of acrylic pieces.. I feel like there's so much work to be done! But it's all fun and I'm happy to be such a big part of the project.

I saw my Dr this morning, and everything seems to look fine. He mentioned I should start making yearly visits to the dermatologist, OBGYN and eye Dr just as I would later in life, but to start now for early screening. So I have to work on that. My appointment went well, but the Dr was running really late. It ended up when I got outside, my medical transportation had left me there.. so I was stranded. I called Lucien who thank goodness was around and he had to cancel some meetings and stuff to come and get me. I was really upset that I had been stranded there.. I'm really tired and wanted to get home to rest, and there I was stranded. So I sat outside on a bench, watching people coming and going, trying to figure out who was the patient and who was the visitor.. not too hard since I know what to look for. My leg fell asleep and when I saw the van pull around and stood up, fumbled and twisted my ankle.. ahhhh... what a morning!!!!!!!!!!!!!! I need to make something really positive happen today, because I really need to turn the energy around into something good. Hopefully this week goes smooth and we get a lot done.... and it's only Monday!

May 28, 2009 (Thursday)

Well, Here I am a year older!! My birthday was Tuesday, and I'm 25 years old. It's so amazing everything I've experienced in my 25 years... and I am so thankful to be here celebrating my first birthday after transplant... I am here, feeling good, with my family, and that is all the gift I need.

Saturday we had a big show in Demarest NJ, a benefit concert for the Smile Forever Foundation. The show went really well, it ran like a well oiled machine, no stress, lots of fun and very successful, the foundation raised a lot of money, and that makes me so happy that they did so well. The guys were great as usual, I always look forward to hanging with Joe, Jess and it was a blast joking around with Lenie. With Frank (stage tech) and Amy (stage hand/ merch), it was like a big family event more than work which is the way it should be! My mother and brother also were able to make it down from New Hampshire to see the show, which was awesome, I love performing for my parents whenever I can. Lucien and I performed the opening act, doing songs from Deal With It. It was a lot of fun, and I'm so so happy that everyone that was there from the cast and crew are like family, it just makes it so much more enjoyable.

Sunday was a blast, we had a small joint birthday party for Luciana and myself. Mom and Scott were here (Dad was sick and had to stay home.) Lucien's parents came down, Kathy and Amy & Maleah.. oh and Joe too (the neighbor). It was really small, which is all we could handle really but a lot of fun. My brother helped us get the stairs into the pool, and then he jumped in. I couldn't help it! I missed swimming SO much, so I jumped right in! And yes, it was freezing, but so worth it!! We had a nice BBQ, then cake which I made for Luciana, it was really good, it had a strawberry and a chocolate layer.. It kinda was just a fun big birthday cake, with no theme.. : ) After cake, we got Luciana into her Birthday gown while she opened presents.. I love this dress.. and wanted to see her in it as much as I could! She got great presents from everyone, thank you everyone for everything!!! (And for my presents too of course!!) Her big gift was an American Girl, Bitty baby twin, she's so cute with dark brown hair and pigtails. Luciana loved her right away and started walking around the house with her in the stroller. It was perfect, just what I had hoped for.

It's been a crazy week otherwise with regular craziness, which I won't get into.. it'll all work out. I'd rather not think about some things, and just keep up on the positives. I do want to say how sorry I am, that we have lost a very close friend to our family during the night, Tommy Friedman, who lived in NH, and I am really upset to hear this news, he was really close to my family. But I also have to say congratulations to Ricky and Cindy on the birth of their new baby this morning, little Quinn Francis ... I am so happy to see Pepere's name Francis being passed down!

Other than that, I am just looking forward to the weekend, and hoping that things stay good and calm. I go to the Dr on Monday, So I will update then!

May 18, 2009 (Monday)

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 Dr 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 bloodwork 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 inbetween 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 is 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 Dr in two weeks now. Hopefully handle the lower med dose just fine.

What a crazy few weeks. For starters, the pictures over to the side 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!

Mothers 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. Now.. I love the necklace but honestly my first thought when I opened it was (Oh my goodness, they got me the necklace that looks like a spine!!!!!!!!!!) But 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 help 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!!!!!!

April 27, 2009 (Monday)

Well I went to the Dr 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 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 St. Leos.. the ladies in the parish center were kind enough to let me call Luciens parents (they have a key) but they couldn't help. 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, they 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 Lucianas 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 drummers 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, live life, and of course to meet Chick for

the first time. I wish we could have spend

more time with him, there's so many thing

I would have loved to talk about with him.

Over the weekend we spent

a lot of time with the kids outside (in the sun,

which is what the Dr was upset about). The

little league of Middletown 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!

April 13, 2009 (Monday)

It's been a long time again since I've updated on here, things have been really nutty! I'll start with today's Dr 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 for the pool, Adrian got a children's Bible, Bubbles, Magic School Bus Books and a Bible 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 barbies 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 hearts 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!

March 30, 2009 (Monday)

Well it's been a while since I've updated! Last Monday, I had my normal Doctors appointment, went through the regular blood work and all that jazz. But that night at around 6, the Dr 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.

This past Saturday, we had the honor of performing for Sister Anns Golden Jubilee at the Oyster Point in Red Bank. It was a wonderful celebration on her 50th year of being a nun. It was so nice to meet her family and friends, and to help everyone celebrate the day by performing the music for their lunch and party. Everyone had a great time, including ourselves! It was just a very pleasant and enjoyable time. After everything she has done for us, we were so happy to be able to give back as much as we can.

So that's really about it for today, things were crazy only because of our nerves about my blood counts and our rehersing for the event this past Saturday, but Sunday we had a wonderful family day... it was absolutley 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!)

March 21, 2009 (Saturday)

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 Amy, came to the Lincroft 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 Amy to come with me. We got all decked out, high heals, 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 the Farmingdale 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, this place was beautiful.

So we walked around for a while, Amy 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 in 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! Amy 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, 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 Amy 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. Amy and I had split a ticket.. so we got our ticket out and were staring at it... then we heard... "The winner is, Amy Pina and Sheri Nocelli......." 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, Amy 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 to God 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.. : ) And that means the world to me.

March 16, 2009 (Monday)

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 - its great. We celebrated my father in laws birthday Saturday, there's a picture of him with his birthday burger! And 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, Steve, 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 Steve 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.

March 12, 2009 (Thursday)

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 Robert Wood Johnson hospital in New Brunswick, NJ and admitted on floor 6, 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 bloodwork, 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 infront 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 family's and individuals who are fighting cancer and autism. The director of Smile Forever is Jennifer Falkenstern, 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, so everyone, mark on your calendars as soon as the date is set!

May 23rd, 2009

Beatlemania Fundraiser Concert Event

at the Demarest High School Theater

in Demarest, NJ

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!!

March 9, 2009 (Monday)

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 Dr 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 Dr 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 good, 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!

February 23, 2009 (Monday)

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 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 Metacare. This is the fun part for me is seeing where his record company (Infinite Trend Records) 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! Here's the link for the video at YouTube, make sure you click on, "Watch in HD (High Definition)", and give it a second to load so it's not choppy when you watch it.

Enjoy everyone!!!! and make sure you rate it, leave a comment, and send a link to all your friends to check out!

Click Here for the new No Rest video on YouTube!

February 20, 2009 (Friday)

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!

February 16, 2009 (Monday)

Hey Everyone! Happy valentines 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 Dr appointment today, bright and early...! At least I knew who my driver was because I had him a few times now, so I was comfortable to sleep on the way to New Brunswick. Everyone in the office 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. Thats 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 Dr 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!

February 4, 2009 (Wednesday)

Hey Everyone! My appointment this week went pretty good. I've lost 10 pounds since I've been to the Dr 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 unstress 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, which is so here, with the new rock acoustic album coming out in about 2 months! 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!

(Check out the newly designed site, and all my new pics!)

www.LucienNocelli.com

January 27, 2009 (Tuesday)

Hey Everyone! Well I didn't end up going to the Drs 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 its 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 everynight.. 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!!

January 19, 2009 (Monday)

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. 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, 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 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!

This past weekend, my friend Amy went down to Florida with her daughter Maleah and her mom, and she ran a half marathon for the Leukemia and Lymphoma Society. I was so proud of her, I can't imagine how much work that was for her, and I can't believe she accomplished such an amazing goal! I'm so happy that they got to enjoy a couple of days at Disney, that must have been a great reward for all the work. She is amazing, and I'm just really really happy for her for reaching her goal, and I want to say a Big Thank You to everyone that donated to her fundraising to get her to Florida to complete the marathon. You are all angels for supporting the cause, and Amy's contribution to the fight against Cancer!

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.

January 7, 2009 (Wednesday)

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 everytime she cried, it would start really bleeding again. So I called my friend Amy, 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 Amy, 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 Dr 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 Dr 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!

And I want to wish good luck to Amy! She's going to Florida this weekend to complete a half marathon with Team in Training to raise money for research for the Leukemia and Lymphoma Society! I'm so happy for her, what an incredible experience and achievement she has reached!

December 29, 2008 (Monday)

Merry Christmas everyone!! This is the longest I've ever gone between updates, so there's lots 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 kick off 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 kinda 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 Adrians school, St. Leos 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 months!! 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 player 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, 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!!!! God Bless!