7 Year Bone Marrow Transplant Anniversary
by Sheri Nocelli
7 years. I cannot believe I have reached the 7 year anniversary since my bone marrow transplant. It’s hard to believe that all of the chemo, baldness, sickness and battle was so long ago, when it feels like it was only yesterday.
This has been a great year. Adrian is going to be 12 years old next month. He started middle school this year and made high honor roll the entire year! Luciana is 8. She’s started dancing, and even performed in the recital this year at her dance studio! She has started asking questions when she see’s pictures of me without hair, wondering when I was sick, why I was sick and if it is going to happen again. I assure her I am healthy now and will be here forever for her. Adrian is still pretty oblivious to the whole time frame, which I am thankful for.
Medically speaking, things this year have
maintained steady. My chronic severe dry eye, osteoporosis and morphea scleroderma have all maintained the same status. My blood counts have been steady and normal. I do still go for a full physical and blood test every 8 weeks, which is way more often than most people 7 years out, but it makes me and my doctor more comfortable to stay on top of things because of how rare and severe my case was.
This year has been harder for me mentally dealing with everything I have gone through. I think it’s finally set in of how severe my condition was. I think until this point, I’ve not really fully understood how bad it all was. Two separate family members this year have confided in me that they “thought I was done”, “looked so helpless and fading in the hospital bed” and they both told me they thought I wasn’t going to make it. In my mind, I never really knew it was that bad. I mean, I knew, but I didn’t?
I’ve come to realize that my coping mechanism to get through traumatic experiences is to separate my mind and body. I tend not to mentally deal with trauma as it happens, which is how I appear so calm, cool and collected. To survive, I concentrate on physically getting through the experience only. But, because everything has to surface eventually, years later my mind tells me when it is time to deal with the locked away emotions. The conveyor belt of memories and feelings comes around again, and it’s time to face it. This year I have started experiencing vivid nightmares of my time in the hospital. I have dreams that play out like a nightly broadcast where upon falling asleep, I continue last night’s dream as though it’s the next episode in a soap opera. It’s crazy and it’s playing a major toll on my mind. A few times I’ve even had little daytime dreams interfere with my day. I find that talking to a few of my close friends about it has helped a little, but the dreams / nightmares still continue. I’m hoping they run their course and I can mentally move on, mentally recover I suppose.
This year, we’ve had a lot of fun in life and work. Lucien released two new music videos, Loneliness and No Rest which I appeared in with him. It feels so good to get out and PERFORM again! The adrenaline of performing live or on camera is so powerful; it’s one of my favorite ways of artistic expression.
Speaking of artistic expression – this year I felt I was needing a change in look. I got this killer new haircut and color, where I went dye crazy… and shaved half of my head. It’s such a freeing feeling, shaving my head because I CHOOSE to and not because I have to. I love my new look, it’s very “me”. It’s also been a life long desire to have pink hair… so I figured, why not? It’s now or never, what am I waiting for?! I love it, I feel so good with my new, expressive look 🙂
Last month, I attended an event at my hospital which was called “Celebrating Bone Marrow Transplant Patients – Past and Present”. It was really cool to see so many of the doctors and nurses who were part of my treatment and recovery 7 years ago. I was really shocked when several nurses even remembered what room I had been staying in! It was wonderful to catch up with them all, show them pictures of the kids and to thank them for all they have done. It was extra special to meet another patient of my doctors, Christina. My doctor had put Christina and I in touch a few months ago, and we have become email pen pals. It was so nice to meet her and get to know her in person for the first time!
Overall, this year has sped by at lightning speed. It feels like the “cancer era” was so long ago, yet still effecting every day of my life now. I am hoping the nightmares start going down, so I can move on and not have to relive and feel these feelings. Although, I guess that’s what got me here in the first place is not dealing with the emotions properly. Ahhhh! It’s frustrating, but it’s part of the whole “I had cancer” experience. Even writing that doesn’t click in my brain that it was ME who went through that time. It’s ME in all the pictures. It’s ME in the soap opera of the dreams and memories. But – I am here. I am here to snuggle with my husband, pet my dogs, watch my children grow every day and to live MY life.
I’m Still Here… Just Busy Living & Slacking on Blogging
by Sheri Nocelli
I logged into my website manager today, to see how people are finding my website (what key words they are using, what internet browser, etc). and saw that someone looked me up by searching “Sheri Nocelli Obituary”. This is when I realized.. maybe I should update the blog! Yikes!
Life has been moving at lightening speed. This past July I celebrated my 6 year Bone Marrow Transplant Anniversary in a quiet way. So quiet, that I didn’t even make a Facebook post to my close family. I just let the day slide under the radar, and it felt wonderful to commemorate the date in such a laid back manner.
This May was another HUGE mile stone for me… I turned 30 years old. I’m not going to lie.. the months leading up to this birthday were a little crazy! I started realizing that I’m an adult, getting older, not a young spring chicken any more. Everyone was telling me to calm down, 30 is nothing. But, for some reason, it felt so BIG to me. I eventually got over it, and am learning to embrace my new age.. it’s only a number.
Medically speaking, I am doing really well. My blood counts have been spot on, my energy is great, no new changes in the Osteoporosis. I still get a full physical and blood work up every 8 weeks with my oncologist. My only ongoing ailment continues to be my eyes. This year has been rough with them, they hurt all the time from the moment I wake up to the time I go to sleep. They are constantly red, irritated and burning. No one around me really knows this except for Lucien and the people I work with. I can’t tell you the amount of times I hear, “Wow, you look tired” and fun comments like that. I usually brush it off, but sometimes I’m at the end of my rope and react with a snarky remark, “Yeah, I tend to look like this given the fact I don’t make tears anymore and am in constant pain.” (I can usually hold back from this comment however).
Adrian turned 11 this summer and started Middle School which makes no sense to me whatsoever! I have no idea how I have a 6th grader! Luciana turned 7 and started second grade. I don’t have babies anymore! I’m so proud of the little people they’re becoming.
I have to say a big Thank You to everyone who sends me Facebook messages, E-Mails, Signs the Guestbook on this website… everyone who reaches out to share their own story with me. I have become a mentor to several young women through the internet, and feel blessed to get to know each and everyone of you, and be there for you on your Cancer journey. I am happy to hear that through this blog, and my memoir, that I am able to spread hope & positive vibes to all of you. Thank YOU for allowing my story to inspire you, and opening your hearts up to me as I have shared with you. It’s a lovely circle of human energy I never dreamed I would experience in my lifetime. To all of you warrior-friends – keep up your fight, there is so much life for you to live, and purpose for you to fulfill in this world!
July 22, 2013 (Monday) 5 Year Bone Marrow Transplant Anniversary
by Sheri Nocelli
This morning I folded my kids’ laundry, playfully chased my dogs around and cleaned under my bed. I dusted some picture frames, watered the tomato plants and took a long cool shower. Today I played battleship with my son, and did crafts with my daughter before we went for a swimming extravaganza for the rest of the day.
Five years ago today, I received a transfusion of new bone marrow cells and was given a second chance at life. Five years ago, I couldn’t go near plants due to neutropenia (extremely low white cells), couldn’t take a shower by myself and didn’t have the energy to bend over to look under the bed, or climb the stairs – let alone run or swim. I couldn’t go near my children for weeks at a time for fear of my weak immune system catching something. It’s amazing how much time can change the circumstances of your life.
Today is considered my 5th birthday; my blood and marrow has been growing and flourishing for five years, refreshing my body, giving me a fresh cancer free start. I have seen and experienced things in my lifetime that no one should ever have to endure. I’ve learned about this whole other universe of bone marrow biopsies, spinal taps, blood counts, chemotherapies, hospital living, graft versus host disease and bone marrow transplants– things that used to equate to a foreign language to me until I was submersed in them in the blink of an eye and expected to adjust. I accustomed myself to this world; became a citizen for a short time of this odd civilization and learned about all of these things in order to survive. – I’ve since moved out of this place, but the memories, lessons and experiences live forever in my being.
I woke up this morning in the midst of a horrible dream; I was in the familiar scene of a hospital room wearing a paper gown and pushing an IV pole. A doctor and nurse came into my room telling me it was time for a test, laid me on the gurney and proceeded to run a thick plastic tub in the right side of my mouth. I squirmed in severe pain and discomfort as they snaked this tube far down my throat. My reflexes kicked in, as I started to choke, with the back of my tongue on this alien object – unable to speak or regurgitate it – trapped by its presence in my body.
Then I woke up. I often have random medical themed dreams where I am being poked, prodded and invaded, even if they are scenarios I never actually experienced – like this particular dream which was a complete conjuration of my imagination. While these dreams plague me, and tip my mental stability for a few hours, I have learned to do my best to forget them and move on with my day. This is part of my mental recovery process. I don’t think about or harp on my cancer battle – at all. So, it’s probably my subconscious way of dealing with the trauma of what I have lived through, since I refuse to waste a waking minute on the whole ordeal. Maybe natures form of therapy?
Sometimes it feels like eons ago that I went through my cancer fight – sometimes I feel like it never happened at all. When I see the bald pictures from the time, I feel like I’m looking at someone else. When I tell the story of the time to people, I feel like I’m talking about another woman. But I’m not – and it hits me at this point, that it’s me. I went through this. I had cancer. But then I remind myself, I beat cancer.
In celebration of my 5 year bone marrow transplant anniversary, I wrote my memoir, “Life, Love… Leukemia” which officially is released today. I chose this date purposely in celebration of life, and of winning the war with cancer.
It’s a strange feeling to know that my life is now written in a book, published and sitting on bookshelves nationwide. I have moments where I feel odd, knowing that my whole life is public knowledge – but that feeling dissipates pretty quickly when I get emails and reviews from strangers who thank me for sharing my story with them. I have received emails from cancer patients, their caregivers and even people who are healthy who all are thanking me for inspiring them in some way. Cancer fighters thank me for inspiring them to fight harder, their caregivers have thanked me for opening a door into the mind of the patient, allowing them to understand a little clearer what it’s like from our point of view. Mostly the emails I receive are from healthy individuals who thank me for reminding them to not sweat the small stuff – life could always be worse and to live everyday like it’s your last… it could be after all. I am overwhelmed by the heartfelt support from everyone on “Life, Love… Leukemia” and thank everyone who has opened their hearts to my story and allowed it to touch your life in some way.
Today my heart is with my incredible friends and family, who supported us through my battle and beyond, with my amazing Doctor who was the mastermind in my cancer war and especially to my bone marrow doner, Kerry, for your amazing gift to a stranger, I will never be able to thank you enough.Today is a day to reflect, but to also move on. While five years is an amazing milestone, now I have to look forward to the future. The past has molded me into the person I am today – which I am forever grateful for. However, I can’t wait to see what the future has to hold, and what treasures and experiences are waiting behind the next bend in the road.
(Above) This is the bag containing my new marrow cells, which flourished in my body, and allowed me a second chance.
(Above) The promotional picture for my memoir which is released *today* “Life, Love… Leukemia”
March 1, 2013 (Friday)
by Sheri Nocelli
Another year has gone by at lightning speed! This has been a trying year in some respected, but super rewarding in others. I had a bout of Shingles which took me by surprise, but was manageable to deal with overall. There’s not much you can do to treat Shingles, so I was on Acyclovir for a 10 day run, and then just let the Shingles run its course. My “rebel rock star” patient traits reared their head again with this… I knew I had Shingles, I could tell from the way it looked on my side. I also knew that if I told the oncologist, then I would have been subjected to a multitude of tests and possibly a hospitalization. Therefore, I chose to go to my primary care doctor (who I NEVER go to), and begged him to keep the Shingles between the two of us. He agreed, but told me if it got any worse or if I developed fever, then we would have to tell my oncologist. Sounds like a deal! So, he put me on an antibiotic and sent me on my merry way. By the time I saw the Oncologist a few weeks later, the Shingles were gone, but when I told him, “Oh yeah, I had Shingles a few weeks ago…” he flipped a noodle! He was like, “Why on Earth didn’t you call me?! Shingles is serious!”… to which I answered, “it was no big deal!”… to which… he laughed hysterically. We have fun at least!
This year I had a development with my eye damage when I was forced into switching eye specialists, it ended up being a blessing in disguise. The new doctor did a whole exam and work up which revealed severe cornea damage (something that the first eye doctor failed to mention). Then the new doctor says, “You don’t see as well as you think you do, in my opinion you should have been wearing glasses for quite some time now. I think a lot of the discomfort you are experiencing is from eye strain.” I was shocked at this news, I mean, I thought my vision was blurry because of the dryness. So, I was prescribed glasses… and let me tell you, as soon as I put them on, it was a whole new world! The doctor was also concerned that because of the severe scratches and damage to the cornea that I was at a high risk of infection, so he prescribed a low dose antibiotic for a few weeks. There has been various other excitement, when he tried to change the ointment I use from Bactracim (ointment) to one that had another ingredient in it as well. I ended up having a severe allergic reaction to this new ingredient, and had to do a round of steroid eye drops to recover from the painful infection. I’m not back on the regular ointment and still the Restasis, which is working well.
My blood work thus far has been spot on, with all of my counts in the normal range. My Oncologist is encouraged by my progress, and always looks very happy with my status when I see him. I’m still on an every six week blood work and office visit schedule which is often for someone this far out from treatments. I cannot even begin to fathom that it has been 4 1/2 years since my bone marrow transplant – this just seems impossible, but amazing!
Life otherwise is incredible. The kids are so big. Adrian is in 4th grade and Luciana has started full day Kindergarten! My babies are not babies anymore, and I am so fortunate to be able to witness them growing into the mature pure hearted little people that they are becoming right before my eyes. We are up to seven dogs now… they are my little babies! We still have Francine the Schnoodle, Gigi and Pierre the Shih Tzu’s and Penelope the Boston Terrier, and we have adopted Darla the 4 pound Yorkie, Mabel the teacup brown Boston Terrier and Rupert the 5 pound Maltese. Puppy chaos is wooftastic; I love every second of it!
As of August 2012 we have made a huge change in our lifestyle as a family. I was shocked at one of my appointments when the scale read that I was up to 170 pounds, and I started to do research on “diets”. What I found instead is a new way of life, which is more than about losing weight, but is also a way of keeping your body healthy. I’ve started collecting these gorgeous dishes and bake ware from QVC called Temp-Tations which I am *obsessed* with – and now I’ve begun dabbling in the kitchen… I’m shocked to admit that I love to cook! Lucien, the kids and I all now follow a Paleo life style. The whole premise is that as humans, we should be consuming foods that are wholesome and real such as meat, fish, vegetables, fruit and nuts. The human body doesn’t know how to digest and process all of the junk “fake” foods that our society is bombarded with daily such as sugars, breads, pastas, rice, dairy, and anything else that has been man made. By cutting all of this completely out of our diets, I have lost 25 pounds so far, and have never felt healthier in my entire life. We eat more quantity and quality foods than we ever did, and even more variety than ever before. We eat such a large variety of meats, vegetables and fruits, it’s truly mind boggling. Many times I’m so stuffed; I can’t finish what’s on my plate. I’ve again become an improved version of myself; the kids, Lucien and I have survived this winter season without one cold of any kind… it’s amazing how our bodies are stronger, leaner and all around healthier. It has been a pivotal part of our year as a family, and keeping our bodies well. Our bodies are our temples, and to inject anything unnatural to our genetics makes no sense whatsoever. After everything I’ve been through, I might as well do everything in my power to keep my and my children’s bodies in the healthiest shape possible.
February 15, 2012 (Wednesday)
by Sheri Nocelli
I honestly have NO idea how a whole year passed and I didn’t get on to blog or journal once! I guess that is a good sign for my recovery if things are that slow in the medical end of things. SO much has gone on since last April, all good thankfully!
Last year we added a few members to the family… 4 puppies! We have Francine (the Schnoodle), Gigi (the Shih Tzu), Pierre (the Shih Tzu) and Penelope (the Boston Terrier). They are like babies to me, which is funny, because I was getting the “baby” bug, and since I can’t have any more children due to the menopause that my treatments put me into, the puppies are the next closest thing! I love them dearly, and it definitely feels like it was always meant to be that they’re here. I’ve fallen head over heels for them! It’s been a learning experience since I never had a dog before.
In our work life things are great as well. My husband’s new album was released in November. “EvoLucien” is doing awesome and we’ve been busy with promotions, music videos, interviews, touring, etc. It’s a crazy roller coaster ride and I love every second of it. This album was extra cool for me even though I didn’t get to sing or perform on the music end; the album is a concept album complete with a story line and a huge 24 page booklet. For this album, I was able to create 3 pieces of artwork for the booklet to illustrate the story line, so I spent months working on the three pieces in a tedious form of ink work called Pointillism (the entire picture is made of tiny dots). I spent hundreds of hours creating these pieces and am so proud of them now that they’re published.
Medically speaking, things are smooth. My blood work has been perfect (in the words of my Oncologist). My eyes are the same with the chronic dry eye. I still have the tear duct plugs in, and I still have to use Restatis and Bactracim (ointment) twice a day, but without it I can’t stand the pain of the dryness. I also had to visit the OBGYN this year because of other issues caused by the dryness of Menopause. The problem with this dryness is that I’m at a high risk of infection, so he wanted me to start an estrogen cream to moisten things up a little. I fully intended on using it until I read the fine print… “women who have had cancer previously are at a higher risk of developing uterine cancer, breast cancer, and other cancers when using this product.”. Um, no thanks? Other than that, medically I am well 🙂
The kids are getting big, Adrian is in the third grade at Lincroft Elementary School. He also started Ballet this year and it has been amazing for him! It’s great for him to work on focusing and controlling his body movements. Luciana is 4 and in her last year of preschool. It’s depressing to think of next fall when she starts Kindergarten and she won’t be home until 3:20 in the afternoon – I’ll miss having lunch with her every day.
So, as you can see, life is pretty normal (as normal as ours can be!). I’m amazed that things are back to routine and am thankful every day for the chance to be here on this earth, with my beautiful children, my soul mate Lucien, my little puppies.. the whole deal. I breathe every breath of air with appreciation for this beautiful chance to live life to the fullest.
April 14, 2011 (Thursday)
by Sheri Nocelli
Oh my goodness it has been WAY too long since I’ve gotten on here! I have not forgotten about all of you! I can honestly say that life has been that crazy busy!!! I’ve totally had ups and down’s in the past few months, but now, as spring arrives, things are all looking great!
Most of the time I was actually sick with a “mystery illness”… it was a runny nose, cough, tired, sickness that lasted for about three months! Literately, I was sick from the day before Thanksgiving until late February!! We tried one round of antibiotics, a Z-Pack, but that didn’t do anything. A week later we tried another, stronger antibiotic did nothing! Two weeks later, the doctor tried Leviquin AND a Z Pack at the SAME time (woah.. that’s a cocktail!) and still, I couldn’t kick this cold. SO, after a lot of kicking and screaming on my behalf, my oncologist made me come in for a blood transfusion of immune globins to raise my immune system since I just wasn’t kicking this thing. What a horrible experience, I mean, my nurses were great, but being stuck in a hospital bed for 9 hours, attached to an IV pole sure did bring back some nasty memories. Thankfully, that did the trick and a few days later (and hearing some “I told you so’s” from the doctor I finally got better.
Other than that, blood work has been looking great! So my appointments are getting more and more stretched apart… which is nice to not have to trek up to north Jersey every few weeks, but also a little scary to not have my counts checked. This stretch I’m on now will be an 8 week stretch… a little TOO long for my liking, but I suppose they have confidence that will be okay : )
On the home front, I have some wicked exciting news. After 8 long years of not getting behind the wheel, I’ve started driving again!! I felt like I needed to become more helpful when it comes to errands, and getting the kids around, and stop being “the patient”. So I went and test drove some cars… I totally needed something SMALL, because I have zero perception of where a car starts and ends (ask my step sons, they’ll tell you about the time I drove over the curb with them in the car, c’mon guys, let me forget about that!). SO, I ended up with the most adorable car, a green Nissan Cube!!! :::ahhh::: It’s love : ) It’s been amazing to pick up Luciana at school, music blaring, singing my lungs out, and just feeling great! I love that I can run to the grocery store, or the bank, wherever (as long as it’s not too far)… It’s really been liberating in a sense. I was even able to sign up Luciana for Ballet classes, because I know I can get her there and back without asking Lucien to take more time out of his long work day.
I can’t believe it’s going to be May. More so, I am in shock that I’m going to be 27!!! I feel like an adult! Which I guess I should by now! It’s just crazy, looking back almost 10 years ago, a 17 year old version of myself, falling in love with Lucien, making huge like choices, starting off in a one room apartment with some guitars, clothes, a bed and a plug in burner to cook on… to where we’ve come… two beautiful children who are the most precious gift I could have ever dreamed of, a loving husband who has been there and will be there and is my everything, my soul, my mate, my everything, my love, my complete life, a beautiful house with a lawn and a pool and a purple living room in a beautiful town, our music lesson business that is growing by leaps and bounds with the best clients in the world who make everyday fun to work for them, oh my god the list could go on FOREVER of all the amazing people, all the amazing things, everything that I am SHOCKED and THANKFUL for every single day… I constantly sit and think… “How the heck did a 17 year old kid get to right here, right now?” I am so lucky, and so proud of everything that we have achieved as a family in these short 10 years, and most of all, I am so thankful that I fought hard enough, and am here to see the fruits of all of our hardships and labors over the years. Man, we had to work for every single thing we own, every experience we get to live, and every dream we get to look forward to. I don’t take one day, one minute, one second, NOTHING for granted. Every day that I can hug my children, kiss my husband and know that our family has an amazing limitless future to come, I am so thankful. I love you all! :::HUGS::::
October 19, 2010 (Tuesday)
by Sheri Nocelli
What a whirlwind life has been since I last touched base in July! So much has gone on, and life has whisked me into the express lane so much, that it was difficult to exit off and take care of things, like updating the blog! So, I have so many updates, both good and not-so-sure-yet too.
I’ll start with the “eh” updates I think to get them out of the way and keep it real. I’ll start with the “eye” issue updates. The doctor in Edison turned out to be great. He listens to what I’m telling him, and also was willing to work with my oncologist on a treatment which is what I was hoping for. He started me on Restasis drops to help my eyes with tear production. I tried that for 2 weeks, twice a day and really it didn’t help, and my vision got a little worse in that time frame. I went back, and he started me on another medicine called Bacitracin Ointment which is a gel like substance (almost looks like Neosporin) which has to be applied under the eye lid twice a day. It makes your vision VERY blurry, almost like you’re looking through wax paper. This lasts 15 minutes or so, and then starts to dissipate. This ointment has helped me with a lot of the pain and has allowed me to get through the day with a lot more comfort. Unfortunately, the eye doctor seems to think this is not the “end all” cure for me (and upon my research, the Bacitracin isn’t something you want to stay on for a prolonged period of time or it will cause new problems) and he has another plan. Plugs! Ah! He wants to insert Punctal Plugs in my tear ducts, which will supposedly stop the tears and moisture from draining. Great. This is planned for next week, and I’m less than thrilled. He wants to place temporary Plugs in the ducts which will disintegrate a week later. If they help, then he wants me to come in and get permanent acrylic ones inserted. Now, by permanent, you would think that meant forever. Naw, of course not. He said if you rub your eyes too hard, or pick at the corners, you could dislodge the plug and have to go back into the office to have it put back in. I am really not sure how all this is supposed to take place, seeing as though I can barely sit still for a regular eye exam. We shall see!
In August, while at Target buying school shoes for the kids, Lucien noticed a brown splotchy area on my shoulder. Well, needless to say, that completely crushed my Target shopping fix! I checked it out in the mirror and it looked dark brown, and shiny, almost like little scars. I’m always the first to make excuses, so I noted the fact that this spot lands exactly where I wear my purse straps.. hmm? So I showed it to my oncologist at my appointment in August. He said right away that he doesn’t like the look if it, especially because the area is slightly raised, so he set me up to make an appointment with the dermatology department of the hospital. They made me an appointment for December or something crazy like that. So I figured it was probably just a routine checkup and nothing more. WELL, two days later I get a call from the Dermatologist office saying “Your Oncologist found out that your appointment was in three months, and said that was unacceptable. He’d like you to come in sooner. How’s tomorrow with the head doctor?” (Okay, this was an alarming change of pace! Oh my God this can’t be good!). So I went in the next day and after an hour of scrutinizing my various markings, they told me they wanted to schedule biopsies in two areas. One on my shoulder, and another one under my arm. AHH! Me + needles don’t mix. It’s my greatest fear in the whole world and this is no exaggeration. So I went in last Wednesday for the procedure. Needless to say, I was a complete nervous mess, so I took two and a half Ativan before arriving (do not try this at home, the regular dose is one!). The doctor who did the biopsy was great and fast, and a really sweet nurse held my hand and talked me through it. The Ativan helped so much, because I only cried the whole time (that’s pretty good for me, usually there’s a lot more drama with needles). So anyway, the interesting thing is that they didn’t biopsy the first spot I was talking about, they did one under my left arm near the elbow, and another under the left arm right near the arm pit. The most interesting thing is that the spot under the arm pit has an identical marking under my other arm, so that makes me not so worried. I have the feeling that it could be some graft vs. host disease rearing its head again, and I just don’t think that it’s skin cancer… (This is my gut feeling anyway). So now I have stitches, which will get removed next Monday the 25th. The results of the biopsies are disheartening – the two location samples they tested show “thickened bundles of collagen aligned parallel to the skin surface are crowded in the reticular dermis” – AKA – I have Morphea Scleroderma. This is a thickening of the skin which can cause major complications over time, including scarring because the production of collagen becomes unregulated and out of hand, therefore abnormal causing excess collagen to be deposited in various organs and/or tissues of the body. This is something that we will just have to watch over time to see how it progresses.
We shall see. Oh and to add to the joy of my appointments on the 25th, I also have a regular checkup with my Oncologist that day where I’ll be getting my MMR shot (since I’m 2 years old now), as well as the Chicken Pox Immunization as well. (Yes, expect more tears and drama from me!).
But you know what? I have some exciting news, which I know a lot of you have been asking me about since I’ve reached my 2 year milestone. The day after the two year mark, I sent in my “consent” form to find out who my donor was. A few weeks later, I got the letter in the mail I was waiting for, which introduced me to Kerry, my donor. On the form I was given her name, age, city and state, email address and phone number. It was so amazing to put a name behind my donor, and immediately I was on the phone calling my mom to tell her the news! My husband’s first reaction was, “Wow, she’s from Colorado? Maybe you inherited a skiing ability!” Well, I doubt that. Hahaha! After settling down from my excitement for about an hour, I knew I needed to contact her as soon as possible to “meet” her and thank her. I decided to call her instead of email, because I didn’t really feel that thanking someone for my life through email was enough and I’m so happy I called. She’s so sweet and kind and it was the best feeling in the world to get to know the person whose blood has allowed me to live my life. It’s been wonderful getting to know her more and more, chatting through email and Facebook, and I’m looking forward to keeping in touch with her for many years to come and really, I’ve thought about it, and I think the best way to continue to thank her for her amazing gift to me and my family, is to enjoy life to the max, and life every minute to the fullest.
July 22, 2010 (Thursday)
by Sheri Nocelli
2 Year Transplant Anniversary
Today is my 2 year anniversary with my new bone marrow. It’s so incredible to think that two years ago I was so sick, literately to the point of not being able to lift my head out of my hospital bed, and now today I’ve spent celebrating with all the fun little pleasures in life…. playing Rock Band with my step sons, eating lunch with all the kids, swimming in the pool, painting with my older step son, roasting marshmallows by the fire pit and sleeping in my own bed. I couldn’t ask for anything more!
I haven’t heard anything yet from the Cancer Center about finding out who my donor is, so hopefully things are running smoothly with that. I hope that they consent to us knowing each other. I want to thank them for everything they’ve allowed me to grow older to do and see, and for my kids to have their mother around in their little lives. I want them to know who they helped and thank them more than words can say.
In celebration for my 2 year anniversary, we booked a special dinner at Sesame Place called “Dine With Me” where you can have a buffet dinner (something else I wasn’t allowed 2 years ago because of the germs), and while you’re eating the sesame characters walk around, and pose for pictures and put on private shows. They even surprised me during the “Happy Birthday Song” by announcing my “2 year old birthday” and brought me over a rainbow sprinkled cupcake with 2 birthday candles! It was so much fun, and the kids, Loosh, Justen, Adrian and Luciana all had a ton of fun… almost as much fun as I did!
It was all I could ask for, and the perfect way to celebrate the two year mark of my new marrow.
In other news, my eye problem has gotten progressively worse this past week, with today being the actual worse day so far. My vision has deteriorated rapidly to the point of blurring and double vision. Reading the computer is a major strain and TV I can only handle with sun glasses because the light is so irritating. So I was able to make an “emergency” visit with a new Eye Specialist tomorrow morning in Edison (about 40 minutes away). Hopefully they can treat me properly and I can start to see normal again. 3 months ago I had 20/20 vision, so I can’t imagine that this is normal to be so blurry all the time. I will update how that goes, and now I’m going to enjoy the rest of my big celebration day! What’s next on the agenda? Maybe more swimming… that’s what life’s about 🙂
July 13, 2010 (Tuesday)
by Sheri Nocelli
I can’t believe that time is flying as fast as it is. Summer is cooking this year (heat wise and time wise!). I had my appointment with my oncologist yesterday, and he was able to check my blood work results while I was still in the office, and everything looked great from white cells to hemoglobin levels… phew! This was a nerve wracking “in between time” because it was the first time that I didn’t have to go get blood work done every two weeks and was moved to monthly. It’s nice to not have to drive the early morning trek an hour to north Jersey all the time, but on the flip side, it’s really scary not knowing what my counts are for a 4 week span. Turns out too, my doctor told me I don’t have to come back for 6 weeks. Lucien and I are happy that I’m doing so well of course, but are scared to not have me checked for that long of time as well.
Of course, next week will be a massive milestone for me. Next Thursday, July 22 2010, I will be officially 2 years post-transplant. Along with this comes all these “two year tests” because of my clinical trial I did during Chemotherapy sessions. So yesterday they did an in office EKG and I have to schedule a MUGA Scan (a heart scan). I dread Muga scans, mainly because they inject a radioactive dye right into your blood stream. The rest is a breeze, it’s just lying under a huge machine while across the room, you can watch your heart beating on a screen. For me it’s the nerves with the needle, and the fact of the dye being radioactive that I can’t stand the thought of. I have to schedule that test, and hopefully it will be fast and quasi-painless.
A few weeks ago, we also found out a really upsetting fact. We’re not sure how it affects me or if it doesn’t affect me, but either way it’s unsettling news. The clinical trial I took part in during Chemotherapy included a new drug called Mylotarg (gemtuzumab ozogamicin) which was given as an injection in patient. I remember getting that one too, because it was given via IV push (where the head nurse administers it directly into your IV line, instead of the normal “drip” treatments). It was a drug being tested on patients with AML Acute Myeloid Leukemia. Well, a few weeks ago, the company who makes the drug Mylotarg voluntarily pulled it off the market because it was showing to cause more harm than good with the patient’s heart and lungs even though it was showing promising results as far as attacking the cancer cells. So, of course yesterday I forgot to ask my Oncologist if this is something I should be concerned about or if this doesn’t affect me. Either way – it’s not a great thing to have this in the back of my mind that the drug was pulled off the market so quickly and voluntarily too. We’ll see what this brings.
It’s exciting that summer is here, and my step sons Lucien and Justen are here for over a month to visit. This is when summer really kicks in full blast and we can just swim and play Wii nonstop : ) Well, and work too, but at least there’s more fun involved! We had a blast (literately) on the 4th of July setting off small fire works in the back yard and we’ve also been to Sesame Place as well to enjoy some fun in the sun (which I got reprimanded for by my doctor.. oops!).
I also put a call into my transplant coordinator at the Cancer Center this afternoon to see how to start the process of finding out who my donor is. This is exciting but I’m so nervous too!! I hope they want to meet me, because we both have to sign release forms and had to wait 2 years for this opportunity to know who each other is. I know my donor was a woman in North America, so who knows, maybe we could even meet!!!! I want to thank her for everything she’s given me in my second chance at life, and show her pictures of my kids and my family, and everything that’s she’s allowed me to have the chance to do in my life. I can’t wait to thank her for her generosity, and extend our family to her… after all, we are blood relatives now!
May 20, 2010 (Thursday)
by Sheri Nocelli
I’m so done with the eye doctor! If there’s anything that’s more annoying than being in the middle of two doctors who disagree on the way I should be treated for something, then please tell me about the alternative!
Today I had a follow up appointment with the eye specialist here in Red Bank for the severe chronic dry eye I’ve been dealing with since March. I went to him a month ago, and he put me on Systane 5 times a day. He said if that didn’t work, then he wanted to put plugs in my eyes. Well, my oncologist, from his years of experience with bone marrow transplants, wants me to be treated right off the bat with Restasis. He says this is the proper treatment for what I am suffering from in my eyes. WELL, when I told the eye doctor this today, he replied with, “Well, he’s not the eye specialist is he?”
Wow.. I mean c’mon, this guy completely just lost my business! I was there for 10 minutes, he didn’t want to hear a word I said and I was done. Nice. So I’m going to have to call my oncologist back and just go all the way up to north jersey so see the Princeton specialist who deals with Bone Marrow Transplant patients all the time.
All I know is that I can’t wait for the weekend just to relax and enjoy the beautiful sunshine and warm weather! There’s something about the spring time that just smells like freedom to me.
April 8, 2010 (Thursday)
by Sheri Nocelli
Spring is here!! It’s amazing to me that as soon as this warm weather arrived, and I took in my first deep breath of spring for the year, it immediately gave me a flash back of when I first was diagnosed and hospitalized, and that first time being released from the hospital after a month. I’ll never forget taking those first deep breaths of the unfamiliar warm air, the smell of spring, after being stuck in a hospital room for 5 weeks. It’s a hopeful smell, and wonderful feeling to be wrapped in the warmth of the sunshine, and knowing the spring is here!
And it is that memory that gives me the strength to take normal life “bumps in the road” in stride. This past month was full of mini mountains for our family – hurdle after hurdle, but I’ll take each one of these tests from the world, and go step out on the back porch and breath in springtime air and know that everything will work out. – And oh, what a month it’s been!
This month was crazy. A few weeks ago when we had the big wind storms, we lost power for 5 days. It wasn’t part of the grid though, it was the wires on the side of our house which were corroded, and the storm just finished off their lifespan. So we had “partial power” coming in… we could run about 2 over head lights in the house, had NO heat, and were having power surges. It wouldn’t have been too bad, we were dealing kinda of okay, until we had several mini fires break out with burning power strips around the house in the middle of the night. We caught them all in time thank goodness! When the storm was over, and everything was accessed, we lost $150 worth of power strips, our heating unit to the house needed to be repaired, and we lost our front loader gas dryer; so the whole storm put us in the hole for around $1500.
That was the beginning of the month… moving on; my eyes haven’t gotten any better. At the beginning of March they started hurting like I have sand in them almost every day. The pain starts in the afternoon, and by the end of the day is so unbearable that I can’t even watch TV some nights. So despite using artificial tears eye drops, they are not improving at all. My oncologist says this is probably a form of graft vs. host disease, and that I need to have them looked at by a specialist immediately. Well, I finally made an appointment for this Thursday.. (That’s my version of immediately… 2 months) we’ll see how that goes. I may need a medicated drop for them, but we shall see.
This Monday was the scare of all scares however. I went for my normal appointment in the morning, had blood work, saw the Doctor, and came home. When we got home (a 45 minute drive), there was a message on the machine “Sheri, you need to go to the emergency room or come back here immediately due to a level in your blood work”… woah.. So, we tried to stay calm, we lined up babysitters for the day, arranged for my friend Mya to drive me back up to north Jersey to the Cancer Center, and I packed a bag assuming that this would turn into an overnight stay.
I got there, and they immediately were waiting for me at the door, brought me into the room and did an AKG. My potassium level was reading a 6.8 – which is high risk for immediate cardiac arrest. They did the blood work and had me wait, telling me that I was probably getting admitted. An hour later the results were back and my potassium was normal – the original test was false. They explained that this can happen sometimes when they use a smaller needle, the blood can crystallize and give false reading… so.. I called my father in law for a ride home… and finally got back home around 6 p.m. What a scare… it was a feeling I haven’t had to feel in a really long time, and it was horrible. I was so mentally exhausted from this whole day… but at least it was a false alarm. We’re just about over the scare, but it took us a few days to move on from the “nerves”. Now I’m **petrified** of the eye doctor appointment on Thursday… I’ll update to let you all know how that turns out, and what this eye problem is that I’m having.
OH and the good news of the month… I’m off of the Cellcept for a whole week now. This means no more compromised immune system!! Hopefully my liver levels stay normal so I can stay off the Cellcept!! : )
March 10, 2010 (Wednesday)
by Sheri Nocelli
It’s been so long since I’ve updated on here! I guess that’s a good sign, because it means I’m so busy with work and the kids, that I forget to come on here sometimes.
Things have been a little up and down health wise so far this year. I have been having a lot of blood results coming back with pretty high liver function results. This is something of concern, because it could be graft vs. host disease which is common after a transplant. It is when the new cells fight my cells, and can cause damage. I’ve also been having painful issues with my eyes the past few weeks. It feels like I have sand in my eyes, and as the day goes on, the pain gets worse. My oncologist wanted to see me right away when I called about my eyes to ask him what to do. He thinks it is graft vs. host disease as well, and that my eyes have lost the ability to produce their own tears, resulting in very painful dry eyes. So I am on artificial tears eye drops right now which Lucien has to put in, because I am the biggest baby and my eye clamps shut when there’s a bottle coming at it. It’s pretty painful though, and I have an appointment with a cornea specialist that can determine what’s going on with my eyes. We shall see from there.
So, this Friday, March 12th is such a big date. It’s the 2 year mark of my official diagnosis of Leukemia, and the day I was swept away to go live at Guardian Medical Center. I cannot believe it’s been two years of living my life with the fight; it went so fast. I’m so thankful to be with my children every day. They are so amazing and are my little guardian angels every day when I look into their little eyes, I see these two little people looking back at me, not baby’s anymore. They are everything. I would do anything for them.
Life is back in the fast lane, and I couldn’t be happier. Lucien and I often forget about my battle, because we’re so wrapped up in the day to day routine… until we get a harsh reminder of what we lived through, like my bi weekly oncologist appointment, or every time we put eye drops in, or every time the phone rings and the caller ID says “Guardian Medical Center”.. uh oh, whys the Doctor calling? And our hearts drop until we are calmed by a simple question on the other end of the line.
It’s crazy the whirlwind we’ve lived through in two years, and where we are now … and I’m so thankful that the biggest problem I had today was that I had too much work on my to do list… it’s amazing that life is sometimes back to “normal”. I wouldn’t trade this life for the world.
January 16, 2010 (Saturday)
by Sheri Nocelli
Happy 2010 everyone!!! What a whirlwind the past month has been. First of all, Merry Christmas and happy new year to everyone!! 2010 has a lot of good in store, and I truly believe that. 2009 was cool, but it’s time to move on to bigger and better and brighter things!
Health wise it’s been a little rocky for me this past month. I was sick from Thanksgiving, until about.. oh, a week ago.. it was a virus that I just couldn’t kick. The symptoms were a runny nose and coughing up mucus.. always fun! The good thing was that no one else could catch it, so it must have just been something everyone is immune to – except me! My oncologist tested my antibodies, and as it turned out, I had basically none (or a very low level) and told me I would need a blood transfusion of antibodies. Fun! Nothing like sitting for 5 hours with a drip when that’s the last place in the world you want to be.
My liver function also came back with abnormally high function levels, so we had to do some repeat blood work a couple times, and adjust the meds by putting me back on the Cellcept. The function could be high from the virus, but we are watching because it could also be from long term graft versus host disease (with we are always watching for!). But, overall, for a year and a half post bone marrow transplant, I am doing fairly well! : )
Christmas was amazing this year, it was so much fun, and I was soooo happy to see my family again. We had a great time hanging out and playing games..hehe.. the kids were so precious waiting for Santa, just amazing, I love that time of year sooo much! We were very light on gifting this year, and the great thing was that no one seems to notice.. The kids were more than happy when they opened underwear or clothes… we tried to be extra practical!
The festive season had a downfall however… a few days after Christmas, once my parents were back home in New Hampshire already, my mom Diane suffered a stroke. She was smart though, (thats mom!) : ) and drove herself right to the hospital (since she was driving when the stroke happened). She is doing well now, getting stronger every day. She spent a week in the hospital in Lebanon NH, then moved to a rehab center in Concord where she will be for at least 2 weeks. It’s a long journey for her; she has to re learn how to do everything like walking, washing, dressing, writing, cooking, and basic everyday skills. She’s a trooper though, and her spirits are high… like mother like daughter!
This year I will try to post more often on here about my recovery and all the details. This is such an important year… in July I will be 2 years post-transplant and do you know what that means………???? If my donor agrees, we can know who each other is!!!!!! I’m so excited for that!!
It’s been a long recovery with many many, many forks in the road and twists and turns… but here’s to getting on the highway and kicking all of the long term side effects of all the treatments I’ve had in the butt in 2010… Happy New Year to everyone, I love you all so much!!
December 17, 2009 (Thursday)
by Sheri Nocelli
I can’t believe it’s almost Christmas! It’s so crazy to me that a whole year has gone by already. I love this time, I love the decorations, the festive mood, the tree, the movies, the music, everything about this whole season.
Medically, it’s been a little crazy… I had an appointment this past Monday, which seems to be the schedule they were trying to get me on (monthly). Unfortunately, my sickness hasn’t gotten any better in over a month. I think I’ve actually been sick closer to two months almost… I have a cough, runny nose, and a constant coughing up of phlegm and fun stuff like that. A day or two before Thanksgiving my doctor had called to see if I could come to get the H1N1 vaccine (which I still don’t agree with at all), and I told him at that point that I was sick. So he prescribed an antibiotic, as well as Tamiflu just as a preventative measure. Of course there were all kinds of problems getting the antibiotic filled, and it took like an extra week to get it. I finished the courses of both of those… and I’m *still* sick!
So when I was there Monday, they wanted to give me the H1N1… they had only received 100, and had saved one for me… (how lucky?). I told them I was still sick, and it was a big debate if I should get it. So, they decided to give it to me,.. (side note, I made it through without crying!! major accomplishment!). Then he wanted to schedule alllllll these other tests to see what’s going on, he wanted a chest x ray, and a catscan…. to which I had to basically refuse and beg to put off. The cost of these tests is so crazy, especially a catscan, so I begged to put it off another week or so, and he agreed.
Tuesday I got a call from the oncologist’s office, saying that I need to come back for repeat blood work because my liver function test came back high. Great. The reason for this could be because I’m fighting a viral infection, or could be a problem post-transplant. So we need to see what’s going on with that, and I have repeat blood work for that this coming Monday… something nice and festive to do Christmas week I guess…… ::sigh::
The cherry on the cake was when I got another call today from them…. turns out my antibodies in my system are really low, which is probably why I’m not getting any better. SO they want me to come up there and get an IV treatment of a transfusion of antibodies. It’s basically like any other blood transfusion, only instead of receiving red cells, or white cells, I would be receiving the donors antibodies…. how long does this take? Oh, well, an hour to get there, an hour and a half to get going, 5 hours of transfusion and an hour home….. NOT exactly gonna work in my schedule too easily…… they did say that it could wait until after the new year, which is good, so I’m hoping and praying that I can somehow recover and start producing some antibodies of my own!!!!
On the positive side, I’m so happy Christmas is almost here. I had a little photo shoot with Adrian and Luciana in their Christmas outfits… they did so good, and were so behaved! And I’m super excited to see my family next week!! I can’t wait!!! I hope everything works out and I get better on my own, that’s my Christmas wish!! If I don’t get a chance to come back on here, Merry Christmas everyone!!!!!!!!!!! Love to you all!!!!! : ) Thank you for another amazing year of being such loving and supportive family and friends!!
November 11, 2009 (Wednesday)
by Sheri Nocelli
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 a night cough, but there hasn’t been any fever since last week.
Monday I had an appointment with my oncologist up in north Jersey, 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 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 blood work 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). 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 one of the medications 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)
by Sheri Nocelli
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 blood work, 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… ha-ha… 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 blood work, 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. Only other medical news is that next week I also have to get three flu shots… yay. I’m not happy about this!!!!
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)
by Sheri Nocelli
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 donor’s blood, and has grown from the little 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 too. 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 Diphtheria 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 gets 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 24 page booklet.. So to go along with all this is a lot of artwork, mostly in pointillism to depict the images he is painting with the music. I’m really excited to see the final product.
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)
by Sheri Nocelli
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 negative points I am dreading. 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 doctor 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. And I needed them, because otherwise this virus could turn into something more serious very quickly.
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 North Jersey 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 Adrian’s 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.
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 its war plan is the scare tactic – so every time 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.
Journal – June 15, 2009 (Monday) Day +336
by Sheri Nocelli
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 doctor 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 doctor, 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 church carnival last week… another situation I should not be near, but the kids could see the rides from their bedroom windows and we could hear people screaming on the rides and the “announcer voice” every night bellowing through our house all night. So the kids knew something was going on. So Wednesday night Mya and her daughter came over and we brought all the kids over while Lucien was teaching. It was so much fun! And not too crowded. Adrian and Mya’s daughter 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 and pointillism. 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 doctor this morning, and everything seems to look fine. He mentioned I should start making yearly visits to the dermatologist, OBGYN and eye doctor 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 doctor 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 shipwrecked. 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!
Journal – May 28, 2009 (Thursday) Day +319
by Sheri Nocelli
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 the only 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 the guys. With Frank (stage tech) and Mya (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 family 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 Mya 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 am just looking forward to the weekend, and hoping that things stay good and calm. I go to the doctor on Monday, so I will update then!
Journal – May 18, 2009 (Monday) Day +309
by Sheri Nocelli
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!!!!!!
Journal – April 27, 2009 (Monday) Day +288
by Sheri Nocelli
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!
Journal – April 13, 2009 (Monday) Day +275
by Sheri Nocelli
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!
Journal – March 30, 2009 (Monday) Day +261
by Sheri Nocelli
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!)
Journal – March 21, 2009 (Saturday) Day +252
by Sheri Nocelli
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.
Journal – March 16, 2009 (Monday) Day +247
by Sheri Nocelli
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!
Journal – March 12, 2009 (Thursday) Day +243
by Sheri Nocelli
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!!
Journal – March 9, 2009 (Monday) Day +240
by Sheri Nocelli
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!
Journal – February 23, 2009 (Monday) Day +226
by Sheri Nocelli
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!
Journal – February 20, 2009 (Friday) Day +223
by Sheri Nocelli
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!
Journal – February 16, 2009 (Monday) Day +219
by Sheri Nocelli
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!
Journal – February 4, 2009 (Wednesday) Day +207
by Sheri Nocelli
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!
Journal – January 27, 2009 (Tuesday) Day +199
by Sheri Nocelli
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!!
Journal – January 19, 2009 (Monday) Day +191
by Sheri Nocelli
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.
Journal – January 7, 2009 (Wednesday) Day +179
by Sheri Nocelli
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!
Journal – December 29, 2008 (Monday) Day +170
by Sheri Nocelli
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!!!!
Journal – December 16, 2008 (Tuesday) Day +157
by Sheri Nocelli
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!
Journal – December 8, 2008 (Monday) Day +139
by Sheri Nocelli
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!
Journal – December 1, 2008 (Monday) Day +132
by Sheri Nocelli
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!
Journal – November 26, 2008 (Wednesday) Day +127
by Sheri Nocelli
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!!
Journal – November 17, 2008 (Monday) Day +118
by Sheri Nocelli
I just got back from the doctors, and have updates. First, it was funny when I got there, the nurse who does my blood pressure and weight was all excited to tell me that he had thought of having them try this numbing spray stuff that they use in pediatrics before blood work, so I was like, sure! Let’s try, I’m game! Turns out it didn’t do much of anything, but hey, it made for some fun banter.
Then the doctor came in and checked out everything like my mouth and rash (which is gone) and we talked about what meds I’m on and doses. We talked a little but too about the results from the bone marrow biopsy last week. There are no traces of Leukemia in the bone marrow at this point, which is awesome news. However, he’s a little concerned because I am not 100% donor, I’m 95% donor cells and 5% my cells. What this means is that we have to wait until the end of the week to see another result from the tests, if the abnormal cell is still present in me, then that could mean the remaining 5% is bad cells and will need to be possibly treated. If there is no evidence of the cell malformations then the remaining 5% of my cells might not be bad.
In the meantime while we wait for those results, we are going to lower the steroids now dramatically faster. Last week I was on 40 mg every other day, now we’re going to 30 every other day and next week down to 20 every other day. The doctor said that sometimes getting rid of the steroids and Prograf meds will allow the donor cells to reach 100%. I really hope this works, because if it doesn’t he said I will have to “get another dose of the donor cells” which to me sounds like another transplant. But I’m trying not to jump to any conclusions and I’m hoping that getting rid of the steroids will do the trick.
Over the weekend, we had little Lucien and Justen visit. It was Loosh’s birthday, he is turning 14, so we got him a Dallas Cowboys shirt and I made him a football cake. (Actually he helped me make it!) Then he and I decorated the whole house for Christmas! (We had to because of our schedule this month, so it’s up early, and I love it!) All three trees are up, the village is done, the curtains are changed, and he helped me do everything! All “daddy” Lucien had to do was put the angel on top of the tree and the lights in the tree.
The rest of the weekend we played x box, we have a new game someone gave us (thanks Roy!!!) with these piñata gardens, it’s so much fun! I stayed up with the boys until 1 am playing it Saturday night and we were up bright and early playing again on Sunday! Then Lucien beat the boys over and over at Madden Football, and then little Lucien kicked all our butts in Archery in the Olympic game. We had a great time, it was an awesome weekend!
Journal – November 11, 2008 (Tuesday) Day +112
by Sheri Nocelli
Lots of updates today! I’ll start with my doctor appointment yesterday (Monday). First they did blood work, which they always get the very first time… well, wouldn’t you know it took them three times to get it? I ended up crying my eyes out all through the blood work which hasn’t happened in forever. Thus began my worst visit ever. They did tell me to lower the steroid dose again, which is awesome! But next was the bone marrow biopsy…..
I had to lie on my stomach, and already at this point I was hysterically crying and shaking. They poked around looking for the right spot then cleaned the area. By the time they were starting to numb the area, I was already a wreck and there were nurses holding my legs down. How could I help it?! All those little needles, my worst nightmare and it hurt! Then came the big one, Lucien says this needle looks like a corkscrew. I was in more pain than I can remember since childbirth. I was screaming so loud, and crying so hard, everyone was trying to calm me down, and Lucien just kept telling them, “There’s nothing you can do, just keep going”. And they did. Finally it was over. The head nurse looked at me and addressed the room, “I don’t care what anyone says, in 6 months when it’s time for another biopsy you get put to sleep. No one should have to go through this much agony. Never again!” She was insistent that everyone hear her, and I sure am relieved. So the rest of the day and night I slept right through, with Lucien waking me up for dinner. Today I am still SO sore, it hurts really bad to just get to the bathroom, and sitting aggravates the area really bad. It’s just awful and I don’t wish a biopsy like this on anyone.
On a much happier note, the Benefit concert Saturday night went unbelievably well! We had our usual “sound check” problems, this time though it was a power issue with the theater, if it weren’t for my father being there and figuring the whole issue out, it would have been a enormous problem!
Lucien and I performed the opening performance of the show. We played songs from our latest album Deal With It (if you don’t have it yet, stop by iTunes and see what you’re missing!). We performed Deal With It, Message For Peace, Childhood Friend. Then I stood and sang my version of Fleetwood Macs Landslide.
Then the big surprise of the night, the band came out and we did Give Em A Fight. The crowd went crazy, it was awesome! Give Em A Fight is the perfect cancer battle song! It took a lot of energy, stamina and guts to get on stage this soon after a transplant. Mostly, it was very difficult for me to get on stage in front of all those people looking as round, chubby and different as I do right now from the steroids. However, I have to admit that getting on stage again and that before show adrenaline was the best medicine in the world! I’ve missed the stage so much, it was incredible to be back!
The Beatlmania Stage Show, of course, went without flaw, it was great and everyone had a great time. We had a lot of fun joking around backstage too doing impressions and just having a good time. Thanks Jon, Jess and Joe for helping to make this night extra fun! You guys are the best!
After the show we did the usual meet and greet in the lobby and got to personally thank a lot of people for coming, the line was so long though that we didn’t; get to see everyone. The night was great, everyone had a wonderful time and if you want to see more pictures from the night check out the Beatlemania page of my site! Thank you to everyone who came out and enjoyed the event with us! We love you all!!
Journal – November 5, 2008 (Wednesday) Day +106
by Sheri Nocelli
Everything is coming along nicely for Saturdays Benefit. Everyone is coming to me and asking how they can help which has taken a huge load off of me to get everything ready. The raffles are going to be a lot of fun! There are a few I sure would like to win if I was allowed to enter!! : ) It’s going to be such a wonderful weekend, I’m so excited to have everyone who we love in one big room together for a such a fun night, it’s really like a big party. A lot of my family is coming down from New Hampshire for the weekend, and they will be helping out tremendously Saturday night. Then Sunday morning I think we’re planning on going out for a nice brunch before they head home. Then, of course, Sunday the Jets are home, so I know we’ll have the game televised, and what a way to wind down after all this running around but with a Brett Favre football game?! I’ll have to get all dressed in my #4 jersey, it’s a shame it’s a Packers one though, I’ll have to update and get a Jets Jersey eventually. Maybe for Christmas! It’s really the perfect weekend; I don’t know what else I could ask for!
So this is probably the last update I’ll make until the middle of next week (since I have the bone marrow biopsy planned for Monday morning, I’ll be out of commission for two days or so). So I’ll put up lots of pictures and details from the benefit concert then, and until then, I hope to see you all there on Saturday!!! Love to you all!!
Journal – November 3, 2008 (Monday) – Day +104
by Sheri Nocelli
It’s November! Where is time going?! Halloween was Friday and was so much fun! We took the kids out Trick or Treating for as long as I could last which was just about an hour. Not too bad! Adrian was Buzz Lightyear from Toy Story and Luciana was a pink poodle. They had a really good time; I wish I could have lasted longer for their sake. Adrian could have gone another hour, and I wish we could have. I was just so exhausted; we had to cut the night short.
No doctor’s appointment this week! It was so nice to wake up on a Monday and not have to truck up to the cancer center! Not that I don’t love everyone there, but being home for those four hours was a lot better. I’m feeling pretty good this week, just realllllly tired. I don’t know if that’s from the lowering of the Steroids or the time change or what. I do have a good feeling that I am *perhaps* doing something very typical of myself, and over doing it. I think I’m taking on way too much since this is the week of the big Benefit Concert! I’m super excited, and a lot is done, but there’s so much that has to be done too. As stressful and exhausting as it is, it’s really gratifying and I can’t wait until Saturday. Lucien and I have some surprises planned that *no one* knows about, not even my mother and not even the queen of getting things out of me, Mya! Nope, no one knows our surprises!
We hope everyone can make it Saturday night! Mark it down in your books, November 8th, 6:30 Showtime, at Middletown High School South Theater! Come with the whole family and all your friends, for a full night of music, raffles, concessions and all kinds of fun things! Beatlemania doesn’t come around this area too often, so come enjoy a great show and have a lot of fun! Tell everyone you know and let’s sell out the theater!!
Well, if I don’t get a chance to update again before the weekend, see you all at the show!!!!!!!!! Love to you all!
Journal – October 27, 2008 (Monday) Day +97
by Sheri Nocelli
Hello everyone! What a week / weekend / day it’s been! I’ll start with the news of the day from the doctors office, which of course is a little good news, and a little “eh” news. The good news is that the Steroids got lowered again! Now they’re 40 mgs and 10 mgs alternating every day. That means in another 10 days, I should be able to stop taking them on the every other day! I’m really excited about that. The other good news is that I only have to go to the doctors officially every other week from now on! That’s because this coming Thursday, the 30th is my official 100 Day post-transplant mark. That is a huge milestone, and everyone is congratulating me already on reaching it so well. The nurse I saw today even said that my blood counts this whole time have been rock solid. Let’s hope it stays that way! Now the news that I’m less than thrilled about.. I knew it was coming… they scheduled be for another bone marrow biopsy. Ugh!!!! I dread that, the anxiety, the pain, the grogginess from the overload of Ativan that I get for the next 24 hours… oh I dread this. The fortunate thing is that it’s not for two weeks, so it’s scheduled for the Monday after the benefit concert. I am really nervous already about the biopsy though, I just have to try to not think about it.
The week here was crazy, Luciana had a runny nose that probably wasn’t anything bad, but could turn into something bad if I caught it, so I had to stay clear away from her. But the kids are doing well; it was one of those weeks where I feel like they both just sprouted!
That’s on my end; the weekend was pretty uneventful minus the fact that Saturday was Lucien and my 5th wedding anniversary. We spent it just the way we wanted to, with the kids! We had a good quality family weekend and I wouldn’t have wanted it any other way. Other than that, every spare second we have we’re spending on preparing for the benefit. Remember to tell everyone you know to come see Beatlemania Saturday November 8th!!! We’re never ever local so now’s the chance to come see the show! Not to mention the opening act that Lucien and I will be performing, songs from the album Deal With It that we released in February. Gather all your friends and family of all ages and come see Beatlemania!! I’ll update soon! Love to everyone!
PS – Has anyone secretly arranged for Brett Favre to make an appearance yet???? : ) kidding : )
Journal – October 21, 2008 (Tuesday) Day +91
by Sheri Nocelli
I went up to the hospital yesterday but I didn’t see the doctor, it was only blood work that they did. That’s a good sign I’d say, but it would have been nice to not have that done either. But I was only there about a half hour then came home. I haven’t heard anything from them about the results, so usually no news is good. The only thing I am dealing with right now is that my eyes are getting very bad over the past couple weeks. I used to have perfect vision; I could find the backing to any earring in any carpet! But a few weeks ago they started getting blurry a little bit, and lights at night bother me *a lot*. I think the doctor said he wants to send me to get them checked, which would be great, because it’s getting hard to deal with at this point.
The weekend was a lot of fun. Lucien had a show in Philadelphia on Friday night, so Mya stayed with me to help me with the kids. We ended up having so much fun doing all juvenile “sleep over” -esque activities! I worked on her plastic canvas pumpkin while we watched a crazy movie, we played X Box for a long time then topped off the night after the kids went to bed with caramel ice cream sundaes. It was like being 13 again!
Saturday Lucien had two more shows down in Philly, so the kids went to stay with his parents, and I was able to go to the shows with him. It was a really cute theater, and since he had played there the night before, he knew there was a lot of space away from the people for me to stay in the back of the room. It was really good to see the guys again. The show was a lot of fun, there were some different production songs that we don’t always get to do so it was cool to hear some different tunes.
It was a nice early night, we were packed and out of there by 10:30 and on our way home. In the car we went over the songs that we’ll be performing for the opening act at the benefit concert. I think we might have figured out the song we’ll end with, but we have to get the guitars out and see if it jives well. Oohhh.. What could it be?? The suspense!
Journal – October 13, 2008 (Monday) Day +83
by Sheri Nocelli
Time for an update! It’s great to be back at the front desk again, taking back over the phones and scheduling. I love it, and so does Lucien! It’s a big load off of his shoulders that he doesn’t have to worry about all of that, and he shouldn’t have to because it is a whole job in itself. It’s been great seeing everyone; I can’t believe how tall all of the younger students got over the summer!
I did see the doctor today. It was a short visit, which was really nice. They did blood work like usual, and I didn’t hear anything from them today, so that means everything was probably fine. He didn’t say anything about my skin, so that must be good, and he was happy to hear that I am stronger this week. I did have some strange leg pains over the weekend, but my friend Mya and I (yes, she IS a nurse, so she has reliable information) came to the conclusion that it was something to do with the muscle and not being used to walking around being as physical as I have been. There was a medical term for it, but I can’t for the life of me remember it! That pain got about 50% better today, so hopefully tomorrow it won’t be as bad.
Anyway, the doctor told me to lower the Steroids again starting Friday to 40mgs on day and 20mgs the next. He said as soon as we get to every other day, the symptoms will dramatically get better. Yay! I hope that means the poofy face and belly too, because I want to look half way decent for the Benefit Concert! We’ll see, maybe if I drink a little more water too the poof will go down. Only time will tell.
That’s all from here, for the most part, uneventful. We’re just getting ready for the Benefit Concert. We do so many Beatlemania shows in a year, that we are far from excited over (they are a lot of work for us), but this one is different because it’s local and all our friends and family will be there. We’re really looking forward to it! If you’re planning on coming, we are recommending that you get your tickets in advance, because they are already going fast and they just went on sale this week. This is great news of course, but I also don’t want anyone we know to lose out if you are planning on coming. I’ll update later this week on everything, thanks for checking in!
Journal – October 9, 2008 (Thursday) Day +79
by Sheri Nocelli
We have a lowered Steroid dose announcement! (This is major good news to me!). Instead of 40mg a day, I’m taking 40mg and 30mg, alternating every day. I wish it was just 30 every day, but eh, I’ll take what I can get.
I am feeling much better this week, much stronger. I can walk across the room a little faster and the stairs are a little better than turtle speed now. I am even starting today to be back in the waiting room and taking care of phones and scheduling of the business. Lucien is thrilled about me going back to my duties and taking it off his plate! He thinks he might react though and answer the phone accidentally by habit… it has been 9 months of him juggling his job and mine, I don’t know how he did it.
So I am right now in the waiting room on the regular computer, not a laptop for a change, as I write this. It’s exciting to be able to work again. I can’t take a check or money from someone’s hand, they still have to put it in the “payment box” to be safe with the germ factor, and I can’t touch the doorknob or anything, but I can sit here and answer the phone! I can’t take care of the kids totally yet, as far as diapers, and lifting Luciana in and out of her crib is impossible. So I still have babysitters coming to help me with the kids at night. I’ll start slowly maybe one night a week at a time taking care of the kids. I just need to make sure I’m strong enough that I don’t fall down the stairs carrying the baby or anything (don’t laugh, I tried over the weekend and that almost happened!)
Things are going awesome for the Beatlemania Benefit Concert. There are several local papers that are interested in covering our story and the event itself, and there are a few radio stations that are advertising for us. We are really excited, and are rehearsing our opening act. It feels good to pick up my Acoustic again (ahh.. my beautiful Fender Malibu!) Anyway, tickets go on sale officially tomorrow, Friday the 10th. Please spread the word and tell everyone you know about the show! If you’re in for a lesson you can ask us for some flyers, we have a ton of flyers to give out that you can give to everyone you know. Our goal is to sell out, so if you can help to make that happen, that would be awesome! I’ll update again soon!! Love to you all!
Journal – October 7, 2008 (Tuesday) Day +77
by Sheri Nocelli
Hello everyone! Well, no updates as far as doctor appointments this week since I have the week off from going! That’s exciting because it means I must be doing well. This week I am much stronger, although I have had some days with bad joint pain. My skin even looks like it is clearing up from the rash a little bit. My favorite part though is that my poofy face and belly from the Steroids seems to be going down a little bit.
So I’m sure by now you’ve all seen the info about the Beatlemania Benefit Concert on the main page. The night is being hosted by the church – we are working together to get all the details straight. The show will be held at the Middletown High School South Theater. Lucien and I are super excited that this event is able to take place; it’s really going to be such a fun night to have everyone we love in one room just partying and having a great time. All the proceeds will go towards the medical bills that continue to come in from my treatments, so the more tickets we sell, the more we can pay off. Lucien and I will be performing a 30 minute opening act, performing some songs from Deal With It as well as some other songs. I miss performing so much, I can’t wait to get on stage and sing for everyone!
So mark your calendars, November 8th and buy your tickets! You can buy them at several locations which I will list on the site, or you can buy them at our music school. They are $30 general admission. So please purchase your tickets and spread the word! If you’d like some flyers to give out or hang at your place of work, let us know and we’ll give you some to pass around. So tell your family and friends and let’s fill that Theater!
I will continue to update this week when I hear anything from the doctor. He is supposed to call and tell me to adjust some of my meds (hopefully lower the Steroids again!). I will also update with any new information about the Benefit Beatlemania Stage Show Concert! It’s going to be great!
Journal – October 2, 2008 (Thursday) Day +72
by Sheri Nocelli
So I finally got to the doctor yesterday from rescheduling from Monday. It was a chaotic visit though. There are several different areas of the building that the doctors rotate where they are on different days. Two people sent me to the wrong area apparently where I waited for an hour before someone realized. I knew I wasn’t going to see my usual doctor because he was on rounds in the hospital, but I was supposed to see his nurse. So anyway, I get to the right place, they do my blood pressure and weight (all the fun stuff), but I did lose a pound this week! yay! We do the blood work… ugh… and then I wait for the nurse, who is nowhere to be found. Someone comes in the room then and says, “I looked into everything and it looks like you had a 9 am Pulmonary Function Test over at the hospital because of your cough.” Nice of someone to tell me that.
Anyway, to shorten this story a little, I said no, I will not be doing that test today, my ride will be here in a half hour. The nurse came in and checked me out, she said my platelets last week went up to 93 which is good they are starting to go back up. She looked at my skin, and doesn’t think it looks bad so she called the doctor and told him that I don’t need to make a Dermatologist appointment just yet (awesome news). I do have a cough that I’ve had for about a week. I caught it from Luciana, so I know that’s what it is. They are concerned that it could be Graft Versus Host Disease of the lungs, so I have to keep an eye on it and let them know if it gets worse. Other than that, they said since it is Wednesday already, I don’t have to come back on Monday. I do have to call though and tell the doctor how I am feeling on Monday, and he’ll probably lower the Steroids over the phone at that point. Then, I don’t have to go back in until the Monday after! (Which is Columbus Day, so I have to call and see if they are actually open).
So that’s how that went! Nothing too new other than that. I’m getting ready for my Mom and Aunt Carole to visit this weekend, that’s going to be a lot of fun. I’ll also try to get some pictures on here of the Halloween decorations in our house; I go crazy in the waiting room with new curtains and decorations everywhere. I love this time of year and decorating like a crazy woman. It’s so much fun.
Journal – September 29, 2008 (Monday) Day +69
by Sheri Nocelli
Fall is in the air, and I love it! This week was great, we got to open the windows, turn off the air and get some fresh air into the house. For me, that was so wonderful after being in cooped up spaces for so many months. There’s nothing like fresh air and watching the curtains move in the breeze, I’m enjoying every second of it. It’s the little things in life that bring me so much undeniable joy these days!
I did have a doctor appointment scheduled for today, but was unable to get a ride. So I have to call and reschedule for another day this week. So, no medical updates there. I know the doctor won’t be happy, he really wanted to see me today to monitor my skin and the graft versus host disease since we lowered the Steroids last week, but I couldn’t get to north Jersey today any way I tried to make it happen.
My legs got a little stronger this week, maybe that’s due to the lower Steroids. We also had lowered another drug called Prograf to try to stop the shaking that I have in my hands. That didn’t work; I still shake like a leaf. Everyone sees my hands going and tell me, “Wow, look at you shaking!”, but I don’t even notice it all the time anymore unless I’m trying to eat, write or type or something. And of course, I was sick a little last week, and now over the weekend it got worse. I have a bad cough now, runny nose and am really tired (more than usual) and really sore. It feels like the flu, but it’s not. It’s awful! The cough keeps me up all night so I’m extra exhausted and end up sleeping all day. I hope it goes away soon.
Other than that it was a crazy week home wise too. Adrian is having trouble in school so we were on the phone with teachers and emailing them back and forth all week. Ah, the fun little parts of being a Mommy that they don’t tell you about! Luciana just does her thing, walks around demanding what she wants… and getting it. Over the weekend we decorated the waiting room for Halloween. I love it! This is my favorite time of the year; I go bananas with the decorations all the way through the New Year. I handmade all these little black bats and we hung them everywhere, set up a display in the bay window with my Halloween tree, and there’s pumpkins everywhere. It’s such a fun atmosphere, and just puts a pleasant feeling in the house. Fall is the best! Makes me want to bake an apple pie… or maybe just buy one at the store, I’m too tired to bake! I will update after I do get to the doctor this week.
Journal – September 22, 2008 (Monday) Day +62
by Sheri Nocelli
Happy first day of fall! I love this time of year, the weather is so beautiful. Hopefully I can get out and enjoy some of it under a shady tree or something. It would be nice to get the kids outside a little before the cold comes too. And I can’t wait to decorate for Halloween! This is my favorite time of year, since as everyone knows I go curtain and decorating crazy! I love it.
My appointment today went fairly well. My platelets last week doubled which is good, and I don’t know what they did today yet. The doctorr said he would call me and let me know how everything looks. I told him he only had to call if something was wrong or pills have to be changed, but he said he would call either way, he thinks I should know too if things got better. He really wants me off of the Steroids, so he’s lowering my dose again starting Friday I’ll go down to 40 mgs a day. He said he’s lowering them much faster than is usual, I guess that’s good and means I can handle it. I like that they are aggressive with things, it makes me think that they are confident I can handle it.
On the flip side, he does want me to meet with the Dermatologist to see if they agree that I should do the ultra violet light therapy for the skin graft versus host disease that I have. It’s not getting better or worse, but the doctor thinks we should address it in case it decides to get worse. So I have to set up that appointment and we’ll see what they think.
The weekend was awesome, we had Lucien’s boys stay over, and it was Justen’s birthday, he’s ten years old already. So we had a little birthday party for him. I made him a Basketball cake, which was cute and Lucien’s parents ordered some pizzas. Later we all played the Olympic Games on the Xbox, and then Basketball on the Xbox which was great. Little Lucien and I were on the same team in Basketball and won, which was amazing considering I never watched one Basketball game in my life!
Other than that, the little munchkins are good. Adrian started potty training for nighttime Saturday, which is of course not going too well. He woke up wet Sunday morning and woke up Lucien and I at 4 am Monday morning because he wet the bed again. He’s 5 though, and no matter how tired we are, I want Adrian night trained. Luciana ended up getting a fever Thursday so I had to stay far away. She went to the pediatrician on Friday and now she’s on an antibiotic, a nasal decongestant and two different fever reducers to alternate. She’s looking much better today though, but my doctor told me to stay away still, I have to be really careful. And now I will close with a thought for all you football fanatics out there regarding, what else, but the lovely Sunday night game… How Bout Them Cowboys?! Here are some pictures from the weekend. There aren’t any of me because I’ve become soooooo uncomfortable in my own skin with my massive steroid face, that I won’t allow any pictures – at all!
Journal – September 18, 2008 (Thursday) Day +58
by Sheri Nocelli
Things are good here, or stable I should say. The kids are still sick, Adrian is a little better, but Luciana is actually getting worse. She had a little fever last night when she went to bed and her nose is getting worse. It’s been working out where the babysitters are able to be here when the baby is up so I haven’t gone near her in days (that is so hard! I just want to squeeze her little legs and hug her!). I unfortunately am still sick too. I have a cough now which gets worse at night, and I am so wiped out from the moment I wake up that it’s impossible to do anything but watch TV and sleep most of the day. I think it’s going to take me some extra time to get over this little sickness because of my nonfunctioning immune system. I hope it’s not too long, it’s so upsetting to feel weak again after I was doing a little better for those couple weeks.
Journal – September 15, 2008 (Monday) Day +55
by Sheri Nocelli
Another week gone by. I can’t believe I’m a little more than 50 days past the transplant. It’s going so fast, and I’m so thankful that so far I haven’t had to go back to the hospital. I know I could have to if I get a fever or another complication, but making it this far is huge to me.
My appointment today went well. I don’t know how the platelet levels are because the results didn’t come back while I was in the office. The doctor said my skin looked better and not to call the Dermatologist just yet, and we’ll hold off on the whole ultra-violet light therapy thing which I am happy for. That would have been like going to a tanning booth three times a week for a half hour without the tan. It would have been a lot of traveling. I still might have to do it if the skin doesn’t clear up, but for now it’s on the side burner. We also are going to lower the Steroids again by very little, because over the course of the week I got a little weaker by the day, and my hands have been shaking pretty bad, sometimes I can’t even write or hit the right keys on the computer – it’s super frustrating. Hopefully lowering the Steroids will help.
Of course, Luciana and Adrian are sick with runny noses, coughs, and just feeling lousy. And of course, as much as I avoided them all weekend, I got sick too. I have a really bad sore throat, runny nose and just feel awful. The doctor thinks it’s viral, but said firmly to call if I get a fever. Great. Hopefully I get better; I have to rest and drink a lot of fluids to try to get this to go away quick.
Other than that, the week went really well. I have some auctions on ebay of things from around the house to try to raise some money towards the medical and household bills. And I have to say huge “Thank You’s” to everyone who is contributing to the “Fundraiser for Sheri’s Fund” which is linked on my site, you are amazing thank you so much for your support. I also want to thank a wonderful woman who I met on Free Cycle. I put up an add there that I was looking for a treadmill if anyone had one they weren’t using, since I am supposed to be walking for exercise but I’m not allowed in the sun, I really needed a treadmill. Well she emailed me and offered hers and is dropping it off tomorrow morning. I can’t thank you enough for your generosity towards a stranger. Thank you to everyone who is supporting us, the meals, the financial and babysitting support, you are all in our daily thoughts and we are so thankful for everything everyone is doing and continues to do. Things are still so tough for us, just because I’m home there’s still so much craziness involved with everything from the doctor appointments to the bills, the kids and the cooking. I think the beginning of the year is when things will start to turn around for me recovery wise, when we start weaning off of some of the meds. I hope it starts to normalize by then anyway.
Journal – September 8, 2008 (Monday) Day +48
by Sheri Nocelli
Hey Everyone! I had my doctor appointment today, back to the Monday schedule it looks like. I was in and out of there in about an hour which was awesome. My platelet count stayed where it was from last week, actually I think it was 45 last week and was 48 today. (Really that is no change). But since it didn’t go lower, there are no tests to do, just to keep watching the numbers. My skin was a little red today they thought, and they’re not happy that it’s not evening out by now. They also want to get me off of the steroids as quick as possible, which I am thrilled about. The only reason I’m on the Steroids is because of the skin problems at this point. So they’re going to have me go to a Dermatologist and also to get some kind of Ultra Violet light therapy that will heal the skin. They said it’s like standing in a tanning booth. I’m all for that, to get off of these Steroids! I can’t stand the poofy face. I know I keep saying it, but it bothers me that much.
So Adrian started school Thursday. He was so excited. The poor thing though, they messed up his bussing and sent him to the wrong school! They transported him then to the right school which was good, and he really probably didn’t realize what was happening. He had a great two days, loves doing his homework and is happy to be going. There are some pictures of him before getting on the bus with his new Spiderman backpack.
Over the weekend we had some good restful family time. I was a little extra weak this weekend, and had a lot of really bad joint pain in my knees and ankles through the nights for some reason. So the lack of sleep made me extra sluggish. We did some fun low-key things though. We got to make popcorn in the air popper for the first time with Luciana. She was so excited, it was great. Both kids were running around the kitchen like crazy.
Sunday we celebrated kickoff weekend of football! We ate like maniacs, and got to see all three games. I suited up in my Favre jersey and everyone else got decked out in Cowboys (I still don’t have any Cowboys clothes… maybe for Christmas I’ll ask for some, I feel so left out!) We had fun tossing mini footballs around and watching the games. It felt like a normal Sunday which was just what we needed.
Journal – September 3, 2008 (Wednesday) Day +43
by Sheri Nocelli
Today I had my doctor appointment and everything looks really good for the most part. The big news is that the blood test they did last week to see what percentage of my blood has become the donors. We wanted to see 100% donor cells and 0 of my own, and that is exactly what we saw! This was good news and everyone is really happy to hear this. As far as the rest of my blood work, my platelets are dropping which is not a good thing. They were at 70 last Monday, and down even more to 45 today. Usually once I reach 30 I start getting those nose bleeds. So we’re on the watch now to see what happens. They said that the numbers could be dropping because of the Graft versus Host Disease, but if they continue to drop as of Monday, then they will probably have to check my marrow with a biopsy to see what is happening in there.
We also have lowered my Steroid dose from 60mgs twice a day down to 40mgs twice a day. The reason for lowering it is because my knees and legs have become very weak. I actually made a total fool of myself yesterday walking to the car and literately fell down flat on the pavement. My legs just gave out. Luckily I landed on the palms of my hands (which are now two big black and blue hands). I was okay, didn’t bleed but today I am so sore. My arms, legs and hands are just a mess. The doctor was really concerned about the fall, and said it could be the Steroids making me weak.
On a side note, Adrian had his Kindergarten Orientation this morning, so Lucien brought him. He got to meet his teachers and see his new school. I can’t believe my baby is starting Kindergarten tomorrow. I had to get all of his paperwork together today, label his backpack and everything and I have to make sure I have fresh batteries in the camera for the morning. He’s such a big boy! I can’t believe I’m the Mommy of a Kindergartener, where is the time going.
Journal – September 1, 2008 (Monday) Day +41
by Sheri Nocelli
Well I’d certainly say that this was the summer that didn’t happen for us! I can’t believe its September. Here I am starting to think about changing curtains and decorating for fall, when I really haven’t even seen my own house since February when I first got sick and shipped off to the hospital.
The week went well with its normal ups and downs. I had a couple nights of really bad joint pains in my knees and ankles again. It’s so severe that nothing, not even my narcotic pain killers can help. Those nights of course I don’t sleep at all, so the days are really hard to get through, I’m so tired. My hands are doing better, still peeling but I’ve been using Eucerin creme and that has been helping a lot. Dry skin became an issue this week, my legs turned to elephant skin out of nowhere. That’s the crazy thing about these random little ailments is that they happen so fast and so severe, there’s no warning signs. I’m trying to deal with them the best I can as they come. The hardest thing still is my big poofy face. It’s even bigger than last week. It’s embarrassing for me, so I don’t let anyone see me.
There’s not too much else going on here. We went through the house a little bit to see if there was anything we could try to sell, or eBay for some extra money. There’s a few baby things Luciana is done with that we’re going to bring to the consignment shop, hopefully they will sell. For some reason this became the toughest financial month for us. I think everything caught up all these months to now. Example, the mortgage was due today on the 1st, and we have literately nothing for it. At least it’s the new month, and hopefully by next Monday we’ll have enough to overnight the payment. It’s just very scary, I’m always a pay on time person and when it’s the bills that really count, I get nervous. The hospital bills are starting to really fly in now too, so it’s a stressful week for us just on a financial mental level.
On a good note, the kids are great. Adrian starts school on Thursday. I’m really happy that the bus will be picking him up and dropping him off right in front of our driveway again. I was worried how I was going to get myself to a bus stop to get him, but now that problem is solved. They usually honk, and I can just come out and get him. Luciana seems to be a little under the weather, but not sick. She’s not been sleeping too well and is cranky so we’re thinking it’s a tooth. But man, does she have a nasty cranky streak when she’s not feeling right… gee, I wonder where she gets that trait from?
Journal – August 25, 2008 (Monday) Day +34
by Sheri Nocelli
I can’t believe another week has gone by! Today I am day 34 already. I had a doctor appointment today, everything looked okay. I’m still waiting for them to call me back about the blood work to see if we are adjusting the Prograf (that the drug that suppresses my immune system). They did tell me to not take another drug today called VFend until I hear from them, because that could be what’s making my Liver enzymes be off. But we won’t know unless I don’t take it to see what my body does, I do need the pill though. So it’s really just a test I think. They also took blood today for a really important test which we will get the results back in about 10 days. I’m anxious for the results; they will show what percentage of me has become the donor cells. What we want to see is 100% and no more of my old cells. This is really important and I think I’ll get more anxious as we get closer to next week for the answer.
Other than that, the week had minor complications here and there. My hands feel much better, but now since Thursday they’ve been peeling. All the skin that was blistered is just flaking off. It doesn’t hurt, but it’s really annoying and very disgusting. Very. I’m extremely tired, last week I think I did too much. We didn’t have a babysitter one night, so I figured I could watch the kids for two hours while Lucien taught – big mistake. I’m completely not ready for that. I just need to make sure I’m covered at nights, because I’m nowhere near ready to handle both munchkin’s. I think I’m pretty covered now heading into the fall.. I only need someone to help on Tuesday nights from 5 – 8ish. I can handle the 8-9 hour I think. It’s just the dinner hour and the time around it. I have one week to find someone.
I want to thank the wonderful people over at the church. They keep amazing us with all of the help. Last week they brought over a new backpack full of school supplies for Adrian who will be starting Kindergarten (I can’t believe it!). Lucien and I were in awe and Adrian is so excited to start school with his new Spiderman backpack and supplies.
It was also the little guys birthday on the 18th, so we had a small but awesome birthday party for him on Saturday. My parents and brother came down from New Hampshire to visit and Lucien’s parents came down. We blew up balloons, had a great Barbeque and a wonderful day. I think this is the first year that he really understood that it was his birthday; it’s so amazing watching him grow up so fast.
After the party Adrian played with all his new toys, and my parents, brother, Lucien and I tried out the XBox 360 (Thank you so much to the families who pitched together to get this for us, it has been the biggest stress reliever, the best medicine there is!) Beijing Olympic Game – what a riot! We were all rolling on the floor laughing for hours. It was the best night, and just felt like everything was ‘normal’ for a nice chunk of time.
The weekend went really fast, but slow at the same time. It was wonderful, I haven’t had that much fun in a very long time. Now I’m excited for tonight, because we’re done teaching a little early, so we’re going to put together our coffee table and end tables that we had bought in January and never had a chance to build. I’m sick of tripping over the boxes, and I want somewhere to put my drink in the living room, so I am VERY excited to get these things built. I’ll update again during the week, everyone please send out prayers this week that the test comes back all donor cells and none of my old cells. This is such an important test we’re waiting for. Again, thank you to everyone for everything that you are doing for us and our family!
Journal – August 19, 2008 (Tuesday) Day +28
by Sheri Nocelli
Things are puttin’ along pretty good. The rash on my hands got better for a few days, then on Friday I woke up with it the worst it’s been. It’s really hard because I couldn’t open pill bottles, cut food, type, anything. It was really frustrating and painful. I used a whole tube of Hydrocortisone cream over the course of Friday and by Saturday morning my hands were much better. I do have a faint rash on my arms that is what they biopsied that I noticed over the weekend started to spread everywhere. It doesn’t itch, but it’s there. Because that seems to be spreading, and also the mucus on my tongue started to spread to my cheeks and lips, the doctor upped my Steroids really high to try to kick all of this out. I was taking 40mg in the morning only, now I’m on 60mg in the morning and 60 in the afternoon. It is confirmed from the skin biopsy that I have Graft Versus Host Disease, which really is to be expected since my donor was unrelated. But if we stay on top of it, then we should be able to keep it under control. Because I have it, my blood work Monday was a little off, my Liver enzymes were high and my Platelets were pretty low, but they told me that’s because of the Graft Versus Host Disease.
Honestly, the Steroids are bothering me a lot, because they make you gain weight first, but mostly because they puff up your face so much. It’s really upsetting when you look in the mirror and it looks nothing like you. I know when I stop the Steroids the puffiness will go away, but it’s still hard to face people knowing that I look so different. I guess though if I have to look like I do in order to stay home and strong and out of the hospital then that’s a fair trade off.
It’s so wonderful being home. The kids are just amazing and do more amazing things every day. Yesterday was Adrian’s birthday; I can’t believe he’s 5 years old already. We couldn’t tell him it was his birthday though, because he would have been looking for a cake and party. He’ll get all of that this coming weekend though. He did love his birthday cards in the mail, he looked at me and yelled, “I got mail?!”, he was so excited and made me read him the cards 10 times.
Other than that, I’m still trying to find foods that taste good to me. The mucus in my mouth masks the real taste of everything. Some strong flavors come through, and some things are downright disgusting. Like I can’t stand dip, hot fudge, apples, ketchup and a ton more. It’s just gross! But there are some things that are so good that I’m just going back to like Salads with Italian dressing, Provolone and Olive Loaf sandwiches on Wonder Bread, steak, sweet corn on the cob, pop tarts and ice cream. It’s so random! I keep trying new things, if I don’t like it I don’t eat it, that’s all!
I’m a little stressed too, because starting the first week of September a couple of the babysitters are not able to continue. I’m not really sure what we’re going to do yet, because I’m not allowed to take care of the kids until I’m at day 100, and I’m only day 28. I think in two weeks I’ll be able to handle Adrian when he gets home from school in the afternoons, but I’m worried about the nights with the baby. I can’t lift her, so there’s no way I can get her up from her nap and feed her, and I’m not allowed to change diapers, so if I have to watch both kids until Lucien is done working, I don’t know how it will happen. I have a few nights covered, but there’s a few that I need to find someone to come over from about 5 – 9 while Luciana is up. I just hope it works out; it’s just stressful worrying about how it’s going to work out.
Journal – August 13, 2008 (Wednesday) Day +22
by Sheri Nocelli
Time for some ups and downs, of course. Things were really great the first few days home, and then on Tuesday I started to get some ailments. I woke up in the middle of the night with excruciating pain in my knees. I had read about joint pain, but you really don’t know what that means until you’re going through it. It had me in tears, no position would help, Tylenol did nothing (as usual), it was awful. In the morning I needed Lucien to walk me to the bathroom, practically carrying me, I just was unable to use my legs. I spent about a good half hour pacing really slow holding onto the bed and that loosened the joints up enough that I was at least able to move around. The pain was there, dull all day, and then got worse at night again.
I also developed this burning rash on the palms of my hands. It made it impossible for me to do anything; I couldn’t even open my pill bottles. It was one of the things that I was supposed to call the doctor about if I noticed a rash developing, so I called. They told me first, that the joint pain is very common, and that if it continues this painful then they will give me a prescription for a painkiller or something like that. About the rash, they were pretty concerned; we need to see if that is graft versus host disease or something else. So they scheduled me today for a …… skin biopsy! Once I heard this I was devastated all the rest of the day, I was a mess.
So Wednesday morning Lucien and Luciana brought me in, and Lucien held my hand while I cried away during the biopsy. It wasn’t that bad, but I don’t want to do that again anytime soon. They took blood while I was there and gave me the pain killer prescription for the joint pain. Now I don’t have to go back until Monday…. thank goodness! Some time off from there will be really nice.
Other than that, nothing else new. Luciana and I are spending a lot of time together. Mostly me looking at her from far away because I still am not going near the kids and if I do, I shower right after. Which reminds me, I want to thank whoever it was that bought me the wonderful shower seat. I had it on my Amazon list, and usually when things ship, I see who sent them. But on that package, the packing slip didn’t say who sent it. Whoever you are out there, I can’t thank you enough, I use that every day and couldn’t shower alone without it.
Alright, I’ll keep updating! Hopefully things start to look up a little bit now.
Journal – August 11, 2008 (Monday) Day +20
by Sheri Nocelli
Things are going really well so far! It’s so wonderful to be home, and seeing the kids again is just amazing. They both changed so much in a few weeks. Luciana had a huge smile on her face and started saying “Mama” repeatedly when she first saw me – that was great. Adrian gave me a big hug and said, “Mommy I missed you so much.” I can’t believe how well he is communicating; his speech has gotten so much better this past month. He started rubbing my head, feeling the hair that is starting to grow back again and told me he likes my new feathers!
Saturday we had a nice barbeque complete with all the foods I haven’t been allowed to eat forever like tomatoes and lettuce on the burger and coleslaw! So good. Of course, I have a little mucus on my tongue that hasn’t gone away yet, and it really changes the flavors of a lot of foods. Some things taste really good, and some are just nasty. I’m eating a lot anyway though, because my appetite is through the roof from the steroids.
Sunday we did something that I don’t think we ever did before. We lounged in jammies all day watching TV on the couch, a first for us. I even pulled together enough energy to do something very out of the ordinary – *I* cooked us dinner. That’s right, my usual specialty if Macaroni and Cheese out of the box, but all the time in the hospital watching food network inspired me to cook! There’s nothing I want to do more than have a Sunday of cooking and the kids helping and running around. Lucien does all the cooking here, so he was really happy to have a day off and we had a nice crock pot Roast for dinner (it was my first meal ever, so I’m allowed to cheat with a crock pot). That really wiped me out though, I was exhausted and don’t think I’ll be venturing into the kitchen anytime soon; I need to slow down and rest. I’m still really weak, going up the stairs takes a good minute or two, I have to go real slow and hold both railings for dear life.
My doctor appointments both on Saturday and today went really well. They lowered my steroids today dramatically, so we have to watch and see how I react to that. In the office they were all amazed that I went home on day 16 after the transplant and was sitting in their office on day 20… They kept telling me I looked great, so that was encouraging. I’m still really ultra-high risk for fever, rash, and all kinds of other problems, so I have to be so careful. Some of those things are out of my hands if they happen, if I get any graft vs. host disease, so we’re praying I handle everything well. On a side note – I think everyone knows I’m a huge Brett Favre fans… don’t know why, I just love watching the guy. When I found out he was coming back to football last week, I immediately wanted a football jersey in the green bay colors (they’re classic Favre, come on!) and now we have Brett the Jet! I can’t believe he’s in New York! I’m hoping I get to make it to a game, even though he’s in Jet uniform, he’s Favre! So here are some pictures of me today wearing my Favre fan gear! Enjoy!
Journal – August 8, 2008 (Friday) Day +17
by Sheri Nocelli
Well, how’s this for an update… I’m home! I’m on day 17 after the transplant, and I’m already home! On Wednesday the doctors took me off of all the IVs I was getting, and switched me over to pills for everything. I figured hopefully by Saturday I’d be able to come home, as it turns out, the doctor came in Thursday morning and said, “So, how’d you like to sleep in your own bed tonight?” I was floored! So all day Thursday the nurses were amazing and went crazy trying to get me all my meds for discharge. It was a lot of work for them, they usually have at least a day’s notice to get everything rolling, but they made it happen! Lucien came in the morning and took all my bags which was great, and then his parents picked me up at about 6 at night. I walked out with my little (big) bag of meds, and boom! I’m home!
It’s really funny because my mind thinks I can do everything normal, like just run up the stairs, or simple things like that. But when I walked in and tried to climb the stairs, wow! My legs were literately shaking and I had to hold the railings really tight to keep my balance. I got right in the shower, what a great feeling to be able to shower!! I really needed to because my hair that grew back is now all falling out again and it is so itchy! It’s like cat hair getting in my eyes, all over my clothes, it’s awful. So I’m trying to wash away as much as I can, I mean, if it’s gonna fall out then let’s just get rid of it.
It’s wonderful to be home, I’m staying in the bedroom for the most part, because I can’t go in the waiting room at all right now. So, that’s the update! I’m home, feeling pretty good, just really tired. Taking 14 prescriptions multiple times a day, and I wouldn’t trade it for the world. I’ll update more often now that I’m home, I have about two to three doctor appointments a week, so I’ll let everyone know how the progress if coming along.
Journal – August 5, 2008 (Tuesday) Day +14
by Sheri Nocelli
This week has been a lot better so far. Once they started me on the Steroids, everything slowly began to get better. By Sunday night I could start to eat again, and people could understand me if I tried to talk. The fevers are all gone, and the doctors keep telling me how well and quickly my blood counts went up. I found out today that they’re letting me go home in 5, possibly 3 days! That was shocking to me, but so exciting. Of course I’m really nervous to go home, I know things are not ready for me yet, and it’s a lot of pressure on Lucien to get everything ready. Luciana is a handful in the mornings for him to handle and try to clean for me on top of keeping the normal household running; this is a stressful week for him.
I’ll update as soon as I hear anything else about going home. It’ll be so amazing to be home. I know there’s many weekly doctor appointments in store, but I’ll deal with that to be home with my family.
Journal – August 1, 2008 (Friday) Day +10
by Sheri Nocelli
It has been a very hard week, and still is. This is the first time I have had the energy to pick up the computer since last Thursday. It all started Sunday morning with one of my famous hour long nose bleeds. The day went downhill from there, we had a nice visit, then in the late afternoon I started getting really weak and right before he was supposed to leave I got a second nose bleed. Lucien was great a stayed an extra hour with me until it stopped, even though it through off the schedule to pick up the kids and everything. From here, every day of the week got worse and worse. I think next started the high fevers, constant fevers ranging between 102 -104 coming down to 100 for a few hour with Tylenol. This went on literally all week, and fingers crossed I made it through last night and half of today at around 97 degrees. I had awful chills all week, changing quickly back to sweats from the fevers, vomiting everything, then the other end of things started going crazy. I got so weak that I can’t yet walk to the bathroom, I have a stupid little commode thing, it’s that bad. There have been times I have not been able to sit up without being lifted in my bed from being so weak. Wednesday they decided to take the central line out of my neck thinking that it might be the cause of the infection and place a new one in my arm – everyone that knows me knows that this is the most torture I go through in here. And this was the worst ever. It took them 2 hours, and two tries to get it right. I was a mess. *Then*, I get brought back to my room and my cell phone was stolen. This was enough that I think I had my first ever panic attack, I couldn’t breathe, they were running around to get me oxygen, it was awful. Thursday hits, bringing along a sore throat, so bad that I cannot drink, eat, take pills or speak. That hasn’t changed today, so they are starting me on IV nutrients. I also have been put on steroids to make me stronger. The Dr says to hang in there; I am really wrapping up the worst of it. Some of the things I am showing are actually sign that the new cells are starting to grow. My white cells are going up right on target, so he keeps telling me I’m doing great and to hang in there.
It’s been crazy, not getting on the computer or being able to talk to anyone. When I had a cell phone I saw everyone calling but didn’t have the strength. Now I can’t even speak to Lucien if I call him from the hospital phone. He knows though and I call and listen to him, he’s been so supportive and amazing. This turned out long, but there was a lot to say! Hopefully things starting turning around now.
Journal – July 24, 2008 (Thursday) Day +2
by Sheri Nocelli
Hey Everyone! Well, here we are on “Day +2” which means I had my transplant on Tuesday July 22. The transplant itself is a very uneventful process; it took about a half hour at the most. It was really just like getting a blood transfusion. The only difference was that the nurse and the doctor stayed in the room the whole time to monitor it.
That night however I did end up with a fever, so there was a lot of blood work and feeling awful. The day after I still had a fever which they were worried about because I was already on antibiotics, so that meant I was spiking through the antibiotics which is not good. The fever went away eventually, but I’m still feeling awful today. It’s been impossible for me to keep any food down. I am hungry though, and craving all kinds of foods from home, I am so done with hospital food!
This morning I feel a little better, I really hope it stays this way and I don’t start feeling crappy again. My hair is growing back really fast, and my eyebrows are really filling in again. I’m happy that it’s growing back, but at the same time it’s kind of a pain because the hair on my head will have to be washed now. It was nice and fuzzy but now it’s starting to feel a little greasy after growing for two days.
That’s about all that’s going on, hopefully I start feeling better. I’ve really felt too awful to talk on the phone, even to Lucien sometimes at night which is hard because usually I wait all day to talk to him. I miss being home more than I can even say, I miss the kids and Lucien so much. I can’t wait to get home and back to normal life. All I want is to be home, work, see my family and be normal.
Journal – July 19, 2008 (Saturday) Day -3
by Sheri Nocelli
Hey Guys! Sorry for the lack of updating this week. It’s been pretty uneventful, pretty much me in the room by myself playing Nintendo DS and watching bad tv. As the week putted along so did the better part of my health, I’m really weak and have been either sleeping or being nauseous most of the time. On Day -7 through -4 I got a Chemo called Busulfan, along with Busulfan they give you round the clock Ativan to prevent seizures. Of course the Ativan is what’s making so physically ill. Saturday and Sunday I got a drug called Cytoxan with ATG, Monday will be a ‘day or rest’ still getting ATG and Then Tuesday the 22 in the infusion of my new cells.
It’s been a little bit of a lonely week, even with Lucien here visiting; I slept through half the time. I just have no energy. I’m too tired to get on the phone, or to play guitar or even sometimes to watch TV.
Before I close off for today though, I want to the the Raike Family for helping us out on our tropical jungle we had taking over the back yard, And to Tracy who took care of the weeds along the driveway. All these things help up so much, can’t imagine how to ever thank everyone. Again, words along cannot express how thankful we are and always will be.
Well, it is late and I have no brain right now with all these typos and stuff, What can I say, I’m waiting on my new marrow! The Doctors are optimistic the way my health is pulling through and as far as anyone saying if they think this will cure me, we keep hearing “It’s the most aggressive treatment, and we have colleagues up and down the east coast very interested in your molecular deformation type of Leukemia.” Not always the most encouraging things to hear, but what’s left but to fight, hope and pray to get healthy and back to my family and friends.
Journal – July 13, 2008 (Sunday)
by Sheri Nocelli
Hey Everyone! Well, here we are the night before I get admitted for the hospital stay for the transplant! We had a wonderful week trying to fit in all the activities and things that we love to do before I head in.
I sat at the front desk all week and got to get a lot of work done, which I was really happy about. I guess I’m a true workaholic because there’s nothing better than answering the phones, talking to students and scheduling, I really miss working. It was great to see everyone and catch up.
Adrian started his summer preschool this week, so Lucien was able to bring me to all my tests and appointments. The pulmonary one went good, I passed it but it was hard! The Muga scan (heart test) went well, and the bone marrow biopsy went as well as that ever could. I was pretty looped on Ativan, 3 mgs to be exact, but it was still awful. By Thursday we were done with all the tests and were free in the mornings.
Friday morning we decided to bring Luciana to Pier Village for a walk on the boardwalk. She loved it so much, she was pointing to the ocean, watching the people on the sand and she fell in love with a little doggie we saw walking. We took her out of the carriage and let her hobble around on the boardwalk for a few minutes which was adorable because she’s only been walking for about three weeks now. It was such a great morning out by the ocean, I’m so happy we went.
Saturday after we were done teaching, we hit the road for a shopping afternoon! We headed up to Freehold to the mall and decided to try out the new Cheesecake Factory Restaurant, which we had never heard of. We actually both hate cheesecake with a passion, but the menu looked good and the dinner was outrageous. After dinner we walked around the mall for a few minutes, we had some errands within the mall to do, like getting glasses adjusted and some other stuff. On the way home I really wanted a coffee coolatta (MOCHA!) so we stopped for a Dunkin’ run.
On Sunday, we went and got the boys, little Lucien and Justen at around noon. They will be staying with Lucien all week for their vacation and to help with Adrian and Luciana. We had such a great day. Lucien grilled an amazing feast of *everything* you could imagine. We had burgers, hot dogs, shrimp, potato skins, buffalo wings, coleslaw, corn, and grilled chicken. We ate so much, that I really am amazed we didn’t all just pass out after dinner! It was another beautiful day, so we took out the kiddie pool for a few laps. It’s a shame we couldn’t open the big pool this year, but that would have been too much work with everything going on. I mean, come on, you can see in the pictures, we can’t even control the weeds which have developed into a tropical rain forest!
So… I’m getting admitted to the hospital tomorrow (Monday) morning at 9 am and I’m sure it’ll be a busy and tiring day. Lucien and I are nervous this time, because we know this is what we’ve been waiting for and also that these weeks coming will be harder to get through. But we’re ready, and just thinking ahead to when this is all over and life resumes.
Journal – July 7, 2008 (Monday)
by Sheri Nocelli
Hey Everyone! Everything is going pretty good for the most part, there’s just a lot of preparation for the transplant and the recovery period at this time. On the 4th of July we got done teaching a little early so we had a quickie burger on the grill (so that we would feel festive) then we decided to clean out all the closets in the house! We ended up throwing out like 8 big bags of garbage, which we just love. We get so excited to clean and get rid of things no one is using. We worked on the bedroom a little bit too getting it ready for my extended stay a la hotel Nocelli…
On Saturday I went with Lucien and Adrian to their eye doctor appointment. Lucien hasn’t been checked in 5 years (I know it’s long, but we didn’t realize!) and Adrian’s teacher said he was showing signs of needing them. So later this week we’ll go pick them up, and I’ll put up pictures of the boys and their new looks! I love Lucien’s new glasses, and Adrian’s make him look like a little man, I can’t wait to see them.
Saturday night Lucien’s parents came over and took us out to dinner at the Outback. It’s so nice to get out and get my fill of stores and restaurants before the transplant because it’s going to be a long time before we can go to these places again.
On Sunday Lucien had a show with Beatlemania in Harrisburg Pennsylvania. I asked Mya and Kathy to baby sit in shifts so that I could go along to the show. It was a three hour drive each way, which was fine because it was really good quality alone time just Lucien and I. The trip had its ups and downs of course. We got into a small fender bender when someone backed into us at a rest stop, and cracked our bumper – great, just what we need right now! But on the flip side, we did hit up the Sonic Drive In and devoured some of their out-of-this-world burgers. We love Sonic, but they don’t have any near us.
The show was a lot of fun, it was great to feel in the swing of things and in familiar settings. It really made us forget for a few hours about everything going on and things felt ‘normal’. It was a beautiful breezy night near the river, the perfect night to be outside. It was great to see Alan again and catch up with him, I’m happy I got to see Jess and thank him in person for the gift he gave a few weeks ago, and it was great to finally meet and get to know Joe. The show went great and was a lot of fun. It was strange, but nice for me to actually get to sit and watch the show, instead of running around like a chicken dealing with all my normal Stage Manager duties.
This week I have a few tests in preparation for the transplant. Today I had a pulmonary function test, which I passed (Whew!). Tomorrow is a heart test in the nuclear medicine department and Wednesday is a bone marrow biopsy which unfortunately I will be awake for. Thank goodness for Ativan!! That’s all for now, I will update at the end of the week!!
Journal – July 3, 2008 (Thursday)
by Sheri Nocelli
Well, I seem to be on more of a ‘weekly update’ right now. It’s hard to log on here when I am home, when I’m back in the hospital I’ll have more regular updates again.
We have been doing so much since I have been home, things feel almost normal sometimes. I’m trying to maintain some sense of normally for the kids, so maybe they won’t realize what’s going on, especially before the transplant comes. Sunday we took the kids to the Philadelphia Zoo. They had so much fun. Adrian loved seeing all the animals, and wouldn’t you know, his favorite one there was the duck that tried to steal his sandwich at lunch time. Luciana’s favorite part was the duck pond, I think because she could easily see them swimming around. (And in case you’re keeping track, my favorite part was the Zebras!)
Okay and now the big news that I’ve been holding off on, but been reaalllly wanting to say – We have a date set for the bone marrow transplant!!! They found a matching donor and I will be admitted to the hospital on Monday July 14th to begin the Chemotherapy. I will get Chemo for about a week, and then I will receive my new bone marrow! This will be about a month stay in the hospital and if all goes well I should be home before September. I won’t be able to work for a few months still, but at least by September I will be sleeping in my own bed and hopefully everything goes smoothly. We are excited and of course very nervous that it’s transplant time, but we are ecstatic that we are being given this chance and we just keep praying that this is my cure!
Journal – June 26, 2008 (Thursday)
by Sheri Nocelli
And another huge update, I can’t believe I haven’t posted anything in a week, things have just been that crazy! So I was kept in the hospital a week. Ugh! Of course it was really that much more boring this time because I really did feel fine, but I was getting antibiotics through IV. So I really did need to be in there, as much as I was trying to get out. There were some highlights though!
My mom and Aunt Carole came down to visit me from New Hampshire over the weekend. That was so much fun! There’s really nothing like having your family visit. Talking on the phone with everyone and emails are great, but it’s so nice to see them actually there. I really wanted to be home for their visit, but it just didn’t happen. We had a good time though, telling stories and catching up.
Lucien had a Beatlemania show over the weekend which we always look forward to annually because it’s right near our house (usually they are always so far away). It’s nice because everyone we know comes every year. I was very upset that I couldn’t make it – not for the fact of the show, I really don’t watch it when I am there because I am working the whole time, but I really wanted to bring the kids and see them dance and everything. So I was stuck in the hospital watching bad TV instead, but it was a great night at the concert.
I finally got discharged this Monday and got to come home! I’m exhausted of course, because the blood counts are very low right now, but are going up pretty well. I did have to get a shot once a day Tuesday and Wednesday – at home! (which for me, is a very traumatic experience). But, my friend Mya (who had organized the bone marrow drive last month) was so amazing and came over on her lunch break Tuesday to give it to me, and she was here anyway on Wednesday too (because she babysits for us on Wednesdays). She is amazing, always there to help (especially give shots, she had a little too much fun doing that! : )
So now things are nice and calm, it’s great to be home with the kids. Adrian is so happy to have me home, and is afraid for me to leave his sight, I think he’s afraid that if he loses track of me I might end up back in the hospital. And Luciana is a little demanding princess! As she gets older she is dethroning me as the royalty of the house, because instead of me, it’s her who is getting everything she wants all the time! (I taught her well how to get what she wants I guess!!)
Journal – June 18, 2008 (Wednesday)
by Sheri Nocelli
It’s been a long time since I have been able to get on here to update. Things have been a little wacky! Last Friday (the 13th go figure) I went in to have routine blood work testing. I also had been having awful nose bleeds all week that lasted between 45 minutes to an hour each time. So I go in for the blood work, with a nose bleed, and then they take close to 16 vials of blood for testing for the transplant. Like any living creature – I passed out! I was depleted of my blood supply. Of course this caused a huge uproar, and they had to call the EMT to bring me *by ambulance* across the street to the hospital. I was totally fine once I came to, but ended up having to stay in the hospital all day Friday, Saturday and most of Sunday morning. So the weekend was wasted.
So I finally got to go back home, for Father’s Day. We stopped at the store to pick up some steak for dinner. And wouldn’t you know, while in the store Lucien ran into Debra Harry (Blondie!). The timing on that was perfect, we never would have ran into her if I had still been in the hospital. So anyway, we had a great Father’s Day. Luciana was walking all over the place! And Adrian was so happy to have me home.
So, on Tuesday I had another appointment to get blood work checked at the Cancer Center clinic. Everything looked fine, I just needed platelets and was able to get home by 1:30. Had a little lunch, did some paperwork for the show this Friday coming up, and then decided to lay down for a little while. That’s when I started to get the chills. No matter what I did, I could not warm up. I did fall asleep, and when I woke up I could just feel how hot I was… I had 102.2 fever. So I called my Dr right away and he told me to get right to the emergency room. Great. So, here I am now back in the hospital – the total last place I want to be. I was really enjoying the time home with the kids, because the transplant is coming up, and I know I’ll be a lot weaker after that.
That is the good news out of everything. They picked a bone marrow donor, and have requested dates to schedule the transplant for July. That is awesome news. So now I am trying to lay low, not get a fever again, so I can try to get out of here by Friday. I really want to make it to the Beatlemania show Friday night, I really want to see the kids dance around and have fun.
Journal – June 9, 2008 (Monday)
by Sheri Nocelli
Finally we have lots of updates to talk about! Much to my surprise, I got to come on Friday. They worked it out so that I can keep the central line hooked up, which is in my arm this time. It’s really nice to be able to leave it in, because if I have to be re-admitted if I get sick, then I won’t have to have the surgery done again to put the line back in. It’s nice too because when I go in for blood work, they can take it through the line and I don’t have to think about needles! That’s a nice perk.
So I got home and went right upstairs away from the teaching area because my immune system is ultra low now. I stayed up there all Saturday morning too until Lucien was done teaching. On Saturday evening, a nurse from the visiting nurse association came to teach Lucien how to clean and flush the two little tubes that come out of my central line. It’s nothing hard, but it’s very sterile. He just has to take these syringes of saline, and put it through the line. This just makes sure that the tubes don’t clog up. After the nurse left, we decided to hit the town! Luciana and Adrian were still at their Grandparents house, so we were able to get some much needed ‘us’ time. We went to the beach at Pier Village. It was a nice safe place that we could walk without being close to any people (for germs), and we just got to take in the air and watch the waves, it was wonderful. We really needed a nice date night like that.
On Sunday I had a follow up appointment at the hospital to check the blood work. Although the counts were all very low (lower than I thought they were), they let me go and I didn’t need any transfusions. So we headed home where the kids were waiting for us already! We celebrated Father’s Day this weekend with a big barbeque dinner. We even stopped on the way home and picked up a little kiddie pool for the kids to go in. They had so much fun. It was a shame because we have an actual pool, but we aren’t opening it this year with everything going on.
Anyway, it’s great to be home. I have to go back for follow ups every other day, but at least I get to sleep in my own bed at night. I am not really supposed to touch the kids too much for germs, so I’m trying not to. I can’t pick them up because of the central line in my arm, so I still will need babysitting help the time that I’m home. I’m just concentrating on not getting sick so I don’t have to get re-admitted, that’s the goal!
Journal – June 5, 2008 (Thursday)
by Sheri Nocelli
There’s not too much going on here, we’re just waiting around now for when my blood counts go back up, and to make sure I don’t get an infection. So, I should be back home by mid-next week if everything goes smooth. My only complaint is this awful rash I have… I’m just so itchy everywhere! Hopefully that goes away soon though.
Other than that, I’ve just been playing guitar and Nintendo DS most of the time. I miss this kids a lot, I won’t see them this week because I didn’t want Adrian to miss any school since it’s almost over and they’re doing all of their end of the year activities. But I’ll see them next week when I get home, I’m just looking forward to that.
Journal – June 2, 2008 (Monday)
by Sheri Nocelli
Hey Everyone! Things are moving right along here, today is actually my last day of Chemo, it was only a 5 day course. What’s crazy is that on Friday I did start to get chills and fever. So I’m on antibiotics since then and still feeling really tired and under the weather.
Lucien came up to visit and I was just so happy to see him. We played guitar for a little while, then we tried out the new Nintendo DS I got for my birthday. Lucien wanted to play Cooking Mama and he did really good at it! We had a wonderful weekend together, watching TV and just spending time enjoying each other. It was perfect.
Today’s been okay, I’m exhausted and I’m starting to get a rash all over my neck and upper body.. it’s awful! But I know it will go away as soon as the Chemo ends. I just can’t wait to be home with my kids and with Lucien. That last three weeks home was such a gift, I can’t wait to get back.
Journal – May 29, 2008 (Thursday)
by Sheri Nocelli
Hey Everyone! Well I’ve been back in the hospital for two days now, and everything is going to plan. I came back in Wednesday to the same day operating room where I was put to sleep for a bone marrow biopsy and spinal tap. When I woke up from that, I was in the pediatric recovery area (since I’m under 25, I sometimes get treated by the pediatric Dr). I ended up hanging out there for a few hours while we waited for a bed to open up for me. Finally one did and over I went.
A was in my room for about an hour then I went to special procedures to have a line put in. Usually I get the triple line in my neck, which I’d rather have, but this time they did a PIC line in my arm. I don’t like this one at all, it’s harder to type, I can’t sleep on my side and I would just rather have use of both arms.
Today has been much better. This morning my attorney, Laura, stopped by to have me sign my Will. She was so nice, we ended up chatting for about an hour, she was awesome. So that was that, we had two nurses be witnesses and it was done.
A little while later, Lucien and the kids got here to visit. They brought me the rest of my things that I didn’t bring yesterday like the computer, guitar and coffee from home. I was so happy to see the kids again.
So the general word so far on this Chemo round, is that the Chemo runs for 5 days, then I could be sent home at that point! That would be nice to give me a nice chunk of time home again before the transplant. And I just want to say another birthday ‘Thank You’ to Josephine for the gorgeous jewelry and the games (Cooking Mama and My French Coach) for my Nintendo DS.. I promise I’ll cook you a “gourmet French dinner”!
Journal – May 26, 2008 (Monday)
by Sheri Nocelli
Hey Everyone! Today is my birthday! That’s right, the big 24. Whew, gettin’ old! Saturday we had a little birthday celebration at Lucien’s parents’ house, and we were able to see my step-sons Lucien and Justen. We had such a great time! We brought the kids to the park and played football for a while, which was more fun than I can even say. We were all taking turns Quarterbacking, reviving, playing defense and just running routes. It was great, every muscle hurts but it was so worth it. The tackling was a bonus too! Then we had a barbeque and some birthday cherry pie and ice cream. It was beautiful outside and was just the perfect day.
Sunday we ran out and got some errands done, which I am probably not supposed to be out doing but, oh well! We needed silly things like pot holders and seat covers for the car under the kids’ car seats. It was kind of a day to catch up on the little things we let go over the past three months due to the craziness.
And wouldn’t you guess, this morning we spent my birthday organizing the bedroom closets and re-vamping the filing system! That actually was all very important to me before I go back to the hospital on Wednesday, so I am totally excited that it got done.
The rest of “my day” I’m going to hang out with Adrian and Luciana and finish up some photo albums we’re working on. And of course before I wrap up, thanks Mom and Auntie Carole for the lovely ‘Happy Birthday’ renditions, they were great! : ) I’ll update on here once I am settled in the hospital, probably sometime on Thursday. See ya later!
Journal – May 22, 2008 (Thursday)
by Sheri Nocelli
Hey Everyone! This has been a really great week home; I’ve been able to come visit in the waiting room with most of our students and their parents which has been a lot of fun. I’m able to do a lot more around the house too, like get my summer curtains up! I’m really obsessive about changing curtains with the seasons, what can I say. I’m also able to take care of the kids this week on my own, which is wonderful.
I did have a Dr appointment on Monday, and everything looked good as far as blood work. We also know that I will be admitted to the hospital again next Wednesday the 28th for another round of Chemo. We don’t have the donor ready to go ahead with transplant just yet, so the plan is about 2 – 3 weeks in the hospital, then 2 weeks home. Hopefully we’ll be ready by July to go ahead with the Bone Marrow Transplant. I also will be going into the hospital on this Friday to get a Bone Marrow Biopsy done, as well as a spinal tap (they keep checking to make sure the Leukemia hasn’t spread to the brain and spinal fluid). Luckily, I get put to sleep for that so I don’t mind and I’m not nervous at all.
Anyway, it’s wonderful to be home, I’m feeling great and everyone keeps telling me that I look good. I joke with them that it’s my “radioactive glow”… I think that’s a funny joke, but not everyone laughs with me. Oh well! : )
One more note – My birthday is on Memorial Day and I have received such wonderful early gifts from people. I don’t have room to thank everyone here, but I really need to say thank you to Jean for such an amazingly generous gift card, that yes I promise I will spend on myself! Thank you so much. I also for an incredible early birthday present from two of our students and their family, a gorgeous travel size Taylor Acoustic guitar for me to bring with me to the hospital. Thank you so much, I’m still shocked, and I can’t tell you how much your gift means to me. I’m actually looking forward to having so much time to playing it, and not dreading going back to the hospital quite so much. Thank you a million times, you’re the best, and you truly blew me away with such a thoughtful and incredible gift.
Journal – May 16, 2008 (Friday)
by Sheri Nocelli
This has been a great week so far being home. Every day I feel a little stronger and slowly I am able to do more. I had a doctor appointment on Thursday. All the blood work came back looking good and I didn’t need any transfusions which is great. I don’t go back to the doctor now until Monday, and it’s really nice to know I have a couple days off from going. I probably get to stay home another week as long as I don’t get a fever or infection. The hope is that the next time I am admitted to the hospital it will be Transplant time. They have contacted 4 of the 7 matches to see if they are still willing to be donors. Hopefully one of them is willing and able to do it quickly and we can start the process. Otherwise, if it is getting to be too long then I will get one more month of Chemo while we wait for the donor to be ready.
It’s just so nice to be home, and spending so much time with the kids. I still needed the babysitters this week to help me because I can’t physically handle the kids yet – mostly the baby! I swear I think she weighs more than Adrian now! I think my favorite part about this week is picking out outfits for Luciana to wear. We even played with her tea set for the first time the other night, and I’m starting to teach her how to play with her baby dolls. I got to play with Adrian on his video game learning system a lot too, and it was great that he was telling me how to play. I can’t believe how big he is either, it’s so amazing.
Journal – May 12, 2008 (Monday)
by Sheri Nocelli
It’s been a couple days since I’ve been able to update on here, but everything is really good. It got crazy because the big push went on to get me home for Mother’s Day, so I didn’t have time to get the computer out. I got home really late Saturday night, it took a while to get discharged because I needed a blood transfusion that day and it was taking forever. Finally Lucien and I got home around 10 pm Saturday. Sunday morning we had to get back in the car at 9 am to drive all the way back to the hospital because I had to get a shot of a drug called Neupogen that will help my white cell count to get higher. There was a silly insurance issue that I had to be discharged first and go back the next day to get that drug for some reason.
Finally we got home again on Sunday and the kids were home soon from their Grandparents and we had a wonderful Mother’s Day. We had a nice dinner, and I got to play with the kids all day (to the best of my ability). I’m still really tired and due to some little issues that come along with Chemo, I have to really be laying on my side to be comfortable most of the time, but by the end of this week I think I should be back to Mommying. I’m pretty much in bed, and I can’t really be in contact with anyone so I have to stay upstairs all day as much as I would love to be downstairs and see everyone! But my immune system is ultra-low and I don’t want to end up sick and back in the hospital before I really have to go back. Lucien and his parents were telling me how skinny I got from this round, so everyone’s trying to pork me up before the next hospital stay. (I love that ALL my clothes fit though!) Anyway, I will keep updating while I’m home to keep everyone in the loop.
Journal – May 8, 2008 (Thursday)
by Sheri Nocelli
Hey everyone. What a day! I had a little bit of a rough night. When I got up to go to the bathroom I passed out. I get dizzy a lot, but this time I just didn’t see it coming and went down! I was okay though and went back to bed. In the morning when I told the nurses everyone freaked out! Turns out it is a big deal because my platelet levels are so low that if I hit my head it could be really dangerous. So now I have to tell the nurse every time I get up (yay). On the other hand, looks like I could still go home on the weekend, I really hope so!
Journal – April 30, 2008 (Wednesday)
by Sheri Nocelli
Hello! This morning I got to see the kids. It’s so amazing how much they can actually change in a week. Luciana has so many teeth coming in, she looks like such a big girl. Adrian had so many questions, about the tubes and everything which is new, he never used to ask about things like that.
I did see my Dr today, and he said that he is hoping for the Bone Marrow Transplant on the next round. That was really encouraging to hear, because the sooner we get going with that, the sooner we can start working on recovery. They did have to give me blood today, because my hemoglobin levels were low. All the other numbers look good and haven’t dropped yet. That’s all for today, it was so nice to see Lucien and the kids, that totally made my day.
Journal – April 29, 2008 (Tuesday)
by Sheri Nocelli
Hey everybody! Again, nothing much went on today. I have a sinus infection that I’ve had since before I came back into the hospital for this round, and it got a little worse today, so they took a chest x-ray to make sure it doesn’t turn into anything else. That took all of 5 minutes of my day. Other than that, nothing new on my end really. Tomorrow Lucien is bringing the kids to visit, so I’m really looking forward to seeing them. I talk to them every night on the phone, and it’s amazing all the new things they’re saying and doing even since I saw them a week ago. So I’m just going to hang out tonight, maybe watch some Dancing With The Stars (go Kristi!) and of course talk to the munchkins before they go to bed. I can’t wait to see them tomorrow though!
Journal – April 28, 2008 (Monday)
by Sheri Nocelli
Hello! Today was yet another uneventful day. I’m starting to get really tired, and just feeling a little sick, but that’s to be expected. I’m just feeling everything a little sooner than I did on the first round of Chemo.
Anyway, I revamped the website today which took most of the day. I had some time to try out the new pen Lucien brought me over the weekend (that’s the large purple thing I’m holding in the picture). The thing is like the size of a hotdog. He’s right, it’s big enough that I certainly won’t lose it. And it matches my jammies!
So that’s it for today, I still haven’t met with the lady who has to make sure I’m not a nut case with the psycho analysis thing (for the bone marrow transplant approval), so hopefully that will happen tomorrow.
Journal – April 27, 2008 (Sunday)
by Sheri Nocelli
Hey everyone. Today was a nice relaxing day with Lucien. I love when he stays on the weekends, it’s what I look forward to all week. I’m feeling okay, other than a really bad rash. I had this same rash on my first round of Chemo, so I know it’s going to get worse. It’s caused by the drug Ara-C. It’s pretty bad and very itchy, and will keep spreading until the day I stop getting the Ara-C. So that will be Wednesday – I can’t wait! It’s the worst rash you could ever imagine. Anyway, Lucien just went home to the kids and its back to just me, hanging out in my little hospital room. Sunday nights get lonely after having Lucien here with me for the weekend. So I’ll probably just lay low and watch some TV.
Journal – April 26, 2008 (Saturday)
by Sheri Nocelli
Hi everyone! Things are going okay here, I’m starting to feel really tired now from the Chemo, and this sinus infection I’m dealing with too. The cough is driving me insane! I am happy though because it is finally the weekend, and Lucien is here visiting me. I wait all week for his visit. We’ll probably watch a movie tonight, snack and cuddle as much as we can. Not too much else went on today, I pretty much slept all day until he got here. So other than being tired, it’s been an uneventful day. I’m just looking forward to a nice date night with my sweetie.
Journal – April 25, 2008 (Friday)
by Sheri Nocelli
Hi everyone, day three of Chemo has arrived. Today I’m exhausted. They woke me up at 7:30 this morning and brought me downstairs to have the Echo Cardiogram done. It was kind of interesting actually; it was just an ultrasound of the heart. Everything there looked good. Then they whisked me away to do the pulmonary test. I had to breathe into this huge machine taking deep breaths on command and all this wacky stuff. I did fine with that too. So at least those two tests are out of the way so we can try to get this transplant moving along.
I got a ton of emails today, it was so nice to hear from everyone. And before I forget, Happy Birthday Uncle Skyp!! I wish we could have made it to your surprise party, it sounded like a lot of fun. And also to let everyone know, I’m mad at Lucien because while he was running errands today he christened the new Johnny Rockets burger place at the mall without me! My burger partner tried the Rocket without me, I’m astonished! Well, I hope that was the best, juiciest, scrumchiest burger you’ve ever had! Just kidding hunny, I love you : ) I’ll update everyone tomorrow, bye for now!
Journal – April 24, 2008 (Thursday)
by Sheri Nocelli
Hi everyone, day two of Chemo went well. I’m starting to get tired again, and I really miss being home with Lucien and the kids. I did get a print out about the drugs I’m getting during this round of Chemo. I’ll be getting Cytarabine IV pushes every 12 hours for 8 days, Daunorubicin (Ara-C) on Days 1, 3, 5, and Etoposide daily for the first 5 days. The doctor today told me that for me to qualify for the Bone Marrow Transplant, I have to have an echocardiogram, some kind of deep breathing test, and meet with the social worker and have a psycho analysis to make sure I don’t have a screw loose.. haha, I laughed and told them, “Okay, I’ll have to act normal that day.” So that’s all no big deal and I’ll probably do most of those things tomorrow and maybe over the weekend. My father in law visited today for a while, so that was really nice. I also spent some time shopping for a travel sized guitar online, that’s what I want for my birthday so that I can play while I’m in here. Otherwise, spirits are good, and everything looks good today!
Journal – April 23, 2008 (Wednesday)
by Sheri Nocelli
Hello! Well, today I started my second round of chemo. I got three different drugs today (I don’t have the names in front of me though). Other than that, it was a pretty calm day with not too much else happening. Here’s a picture of me getting the chemo today.
It’s nothing eventful, just different bags hung up on the IV. The orange tube you see is one of the Chemos, it’s actually a light sensitive one that had to be hung on the IV pole in the dark before they gave it to me, if it gets any light it goes bad. (I don’t know, I guess I find that interesting).
So, that’s it for today. I feel good, optimistic and am looking forward to watching America’s Next Top Model tonight… hey gotta have fun! : )
Journal – April 22, 2008 (Tuesday)
by Sheri Nocelli
Hi everyone! Well, today I was readmitted into the hospital to begin round two of chemotherapy. This one will not be as intense as the first time; there is one less drug this round (Mylotarg) and this course will run 7 days instead of 10. It’s still an intense regimen, just a little less than last month. Since I’ve been in today, the only excitement was going down to small procedures and getting a triple line put in on my neck (always fun). It’s a little less painful than last time though, so that’s a positive.
I did see my Doctor today, and he had the results back from last Fridays Bone Marrow Biopsy, he said there were no traces of Leukemia found, so *technically* we have achieved remission. In his words, the goal is to stay there now for “60 to 70 years”. As encouraging as that news is, we have to remember though that Leukemia hides, and will come out again, so we are continuing with the chemo treatments, and the Bone Marrow Transplant. My brother, as willing as he was to be my donor, was not a match. Of my matches in the national registry, the Dr. said that they will be contacting 4 of the 7 good matches, and that they were all young which works in my favor. The overall feel of the day was optimistic, which is a really nice way to head into this second round.
I do want to say really quickly what a wonderful week home I had with my family. We were able to celebrate a proper Easter with the kids complete with baskets and an egg hunt. They had so much fun, it was precious.
We also got to celebrate Luciana’s first birthday even though it was a week early. She looked like a little angel in her little Gymboree Ice Cream Party Dress. We went to and had some portraits done, then came home had cake and gifts. All I can say is that girls got a sweet tooth!