March 1, 2013 (Friday)
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 it's course.
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 cannnot 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.
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, that is more than about losing weight, but is also a way of keeping your body healthy. 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. 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.
My personal project that I've taken on this year, is that I've decided I'm ready to write my story as a book. There are so many details and parts of the story of my Leukemia that I was not well enough to share as part of my blog as I was going through the treatments that I would like to share with the world. My hope is that my story and experiences can help someone in my position to get through a similar experience, or to help people who are well, to understand what it's really like from the eyes of the Cancer patient. I want to share my story of survival, to spread hope to those who need it - and show the world that you can survive this, no matter how grim the diagnosis - and come out a stronger, better, whole version of yourself. I realized as I started to write my story, that it was impossible to tell the Cancer portion of the story without also including the story of my life leading up to that point. So the book has become a major project in many ways. It's been a TON of research, about myself. I requested copies of all of my medical records from all of the places I was treated during these past few years, and have been delving into the medical version of my story. It's been a roller coaster emotional journey writing the story as well, as I drudge up vivid memories of moments that often times, I've blocked out completely up until the moment my fingers strike the keys - and when I read back my words on the screen, it's often the first time I've thought of these moments since they happened. It's a process in many ways, more than I imagined it would be, but I want the story to be as truthful and raw as possible. I don't like to sugarcoat things, but at the same time I've approached writing this book just as I would hold a conversation telling you my story, so you can really feel my emotions and experience my life through my eyes.
The book, which is still untitled at this time, has been given an official release date of July 22 2013 - exactly the 5 year anniversary of my bone marrow transplant. I will keep updating this page, and sharing my experiences with you here, as well as updates on the book leading up to its release. Thank you for following me through my journey!
February 15, 2012 (Wednesday)
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 - 11 months old), Gigi (the Shih Tzu - 10 months old), Pierre (the Shih Tzu - 6 months old) and Penelope (the Boston Terrier - 5 1/2 months old). They are like babies to me, which is funny, because I was getting the "baby" bug, and since I can't have anymore 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 heals for them! It's been a learning experience since I never had a dog before, so I've started a a blog called "Lincroft Dog Pack" where I can journal all my learning experiences with the puppies.
In our work life things are great as well. My husbands 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 inkwork 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 pre school. 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 everyday.
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 everyday for the chance to be here on this earth, with my beautiful children, my soul mate Lucien, my little puppies.. the whole deal. I breath every breath of air with appreciation for this beautiful chance to live life to the fullest.
April 14, 2011 (Thursday)
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 Dr, 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 New Brunswick 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,, lol)... 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)
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 Dr 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 an 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, 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 Dr 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. Great. 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 Robert Wood Johnson Medical School. They made me an appointment for December or something crazy like that. So I figured it was probably just a routine check up 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 Dr 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 it's 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. I'll get the results at that appointment for the biopsies. 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 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 husbands first reaction was, "Wow, she's from Colorado? Maybe you inherited a skiing ability!". Well, I doubt that.. haha. 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 who's 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)
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 Institute 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)
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 new Brunswick 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 radio active 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 radio active 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 effects me or if it doesn't effect 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 ( Pfizer Inc.) voluntarily pulled it off the market because it was showing to cause more harm than good with the patients 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 effect 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 non stop : ) Well.. okay, 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 Institute of NJ 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)
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 Dr 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. Not for nothing, but this Red Bank eye doctor seems to have a great patient pool of elderly, which maybe he's great at, but I'll never go back, that's for sure.
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)
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. Its 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 artifcial tears eye drops, they are not improving at all. My oncologist says this is probably a form of graft vr. 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 Amy to drive me back up to New Brunswick to the Cancer Institute, 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 re did the blood work and had me wait, telling me that I was probably getting admitted. An hour later the results were back.. 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 dr 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)
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. Usually by 8 or 9 at night I can't even watch tv anymore because they hurt so bad to stay open.
My oncologist wanted to see me right away when I called about my eyes to ask him what to do. He thinks it is 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.. haha..
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 Robert Wood Johnson Hospital. 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 everytime we put eye drops in, or everytime the phone rings and the caller ID says "University of Medicine".. 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)
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 seams to notice.. the kids were more than happy when they opened underwear or clothes.. haha.. 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 everyday. 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!
I want to spread the word to every one up in Manchester.. along with my family in New Hampshire, we have organized a benefit concert event featuring Beatlemania Stage Show to help fundraising to offset the medical, rehabilitating and loss of work income their family is enduring during my moms recovery.
I'll post the show information here, and please spread the word to everyone you know to come out, see an amazing show, have a great time and support the Ritter family! : ) Thanks in advance for the support!!!!!!!
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!!
Beatlemania Stage Show Benefit Concert
Honoring Manchester Resident Diane Ritter, Stroke Victim
Saturday March 6, 2010
Saint George Greek Orthodox Cathedral – Event Hall
600 Hanover Street
Manchester, NH 03104
General Admission Ticket: $30.00
Premium Seating (Front 3 Rows): $50.00
Join us for an evening of music and fun featuring the the nationally touring production of Beatlemania! Featuring all your favorite songs from She Loves You to Sgt. Pepper to Revolution, the show spans the entire story of the Beatles in one amazing night the whole family will enjoy. Sing along, dance and party the night away with the Beatlemania Stage Show! Door prizes, raffles and more!
Opening Act Performed By Lucien and Sheri Nocelli
Tickets Available At:
Puritin Backroom Restaurant
245 Hooksett Road, Manchester NH, 03104
Di-Namic Hair Design
1036 Hanover Street, Manchester, NH 03104
280 Daniel Webster Highway, Merrimack, NH 03054
Online Orders At:
On the Main Page of My Website: