Living It Up In Lincroft
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 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!
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) Exactly 5 years ago today, this is me receiving the bone marrow transplant.
(Above) Exactly 5 years ago today, this is me receiving the bone marrow transplant.
(Above) This is the bag containing my new marrow cells, which flourished in my body, and allowed me a second chance.
(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"
(Above) The promotional picture for my memoir which is released *today* "Life, Love... Leukemia"
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.
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.
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::::
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.
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 :)
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!
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.
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!! : )
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.
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!!
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!!
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..
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 : )
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.
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.
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!
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!