A bit of my history

Thanks to chemo Victoria Beckham and I share the same en vogue look.





Our lovable monkees



Making dough for our Girl Scout Daisy Troop.

I have spent a good bit of time today reading my past entries. I recently joined a website called facebook, and was able to get in touch with so many old friends! Kimmy and Colleen from high school, Tracy, my maid of honor and college roommate, and Charles!!!, my dear friend from all the way back in kindergarten. What a powerful tool.

Reconnecting with people I have been so out of touch with for so long gave me reason to reflect, I suppose. So I started thinking, how long have I had this blog? What have I written about? So many friends have commented on our journey, and I appreciated it, but I didn't really think about it until today. You see, we wake up everyday and just go about our business. Both Jason and I, and I suppose our kids following our example, not thinking about how huge Myasthenia is in our lives and how much it has defined us. We try very hard to NOT make MG the focus of our lives, but it still is. I believe it is a lot like having a third very annoying, upsetting, disruptive person in your marriage. Or an evil house guest that won't leave. lol I am not complaining. This is just the way it has been. Thankfully chemo has lessened the burden tremendously. I keep thinking back to how it was last year. I hardly believe we survived.

I thought this might be a good time to review what the disease is, and what has gone on all these years. My beginning blog entries are very technical, and the more recent ones don't really talk about the MG at all!

A Bit of History....

In March of 1995 I was diagnosed with myasthenia gravis. It is an auto immune, neuro-muscular disease where, simply put, my immune system has falsely attacked my muscles. Only the voluntary muscles are hit, so the heart still functions just fine. The muscles become easily fatigued because the full "message" that they need to move is not getting across because the receptors are covered by antibodies.

I was in my second semester senior year at Villanova, engaged to be married, working as a student teacher, volunteering in South Philly, the vice president of glee club, the president of ski club- the list goes on. What I am saying is, I was busy. When I started to lose weight I thought it was just because I didn't have a lot of time to sit down to eat and when I came home from teaching and needed to lay down I just thought I was doing too much. I didn't take the time to consider that I was having a hard time chewing and swallowing or that my muscles actually hurt they were so fatigued. One day I woke up with a sore in my mouth. I trooped off to the dentist thinking it was my wisdom teeth coming in. He gave me a prescription for what turned out to be an ulcer in my mouth. By that evening, my speech was very slurred. Jason and I laughed it off, blaming the meds. I thought my tongue was swollen. I took the weekend to rest and I did feel a little better. I thought it was so weird that when I woke up in the morning I could talk and by the afternoon I could barely get a word out. Plus I was certain that the shortness of breath I was experiencing was due to my tongue being "swollen".

The following week I returned to my 8th graders with a slightly less smiley smile. I just couldn't get my smile to work! Half way through my first class of the day, my cooperating teacher called me out into the hallway and told me to go down to the teachers lounge and call an ambulance or something- my lips had turned blue and I was gasping for air. Of course I tried to shrug it off, but I did go sit down, called Jason and we reluctantly headed to the emergency room. After scaring the crap out of me, the intern sent me off for a CT scan to determine how severe the "stroke" was that he was certain I had suffered. Thankfully I was cleared, and shipped off to see a neurologist the next day. By the time of my appointment, I was quite certain that I didn't need to see a neurologist, but a psychiatrist. What was happening to me was just way too weird.

March 19th 1995: Within about a minute of meeting me, the Neuro said he thought he knew exactly what was wrong and had me sign a waver to do a test, called a tensilon test, right there in the office. I remember being a little frightened by the waver... all these scary words about heart attack and stroke. Regardless, I really wanted an answer and this would give us a quick one. Dr. Reid had me lay down on the examining table and injected the tensilon into my vein. Within seconds, my heart felt like it was going to beat right out of my chest and dance across the floor and I could TALK. Totally, completely, easily talk. It wore off in 30 seconds or so. Although I was glad to be rid of the heart palpitations, I was devastated that my ability to talk was also gone. The doctor gave me a few minutes to recover and met me in his office where he proceeded to give me the diagnosis that would completely change my life.

Myasthenia Gravis. He told me all about it, and I took meticulous notes. I was happy. Yes. Well, not happy exactly. Relieved that I didn't need to go check into a psych ward. Relieved that there was a real thing going on- and it had a name. I was given a prescription for Mestinon (first given and easiest drug to take and to tolerate for MG)and I was sent along my way with a follow up appointment in a month or so. I completely believed I was going to be just fine. This might be a minor inconvenience, but with the support of my family, and Jason of course, I would be fine.

That weekend, Jason and I had our Pre-Cana training to get ready for our wedding. Mestinon in hand we packed up and trotted off to class. Then the itch started. And the hives. And the burning... ohhh it was miserable. Turned out I was allergic to the Mestinon. Frightened and not sure what to do, I called the neuro and was told absolutely not to stop taking the drug, but to take benedryl along with it until I could get back into his office. I was so miserable, even with the benedryl that I had to stop the drug. I returned to Villanova, ready to take on the world. MG or not, I was determined to be fine. Immediately following my diagnosis, my parents started calling around to find the top specialist in the field. We were able to get an appointment at UPenn that very week. Dr. Schotland took one look at me and wouldn't let me leave the hospital. I guess that was the moment I started to realize just how serious this was. Like, really? I am in danger just going back to my dorm to get some pajamas? Oh yes, Claire. You could stop breathing. You are about to end up on a respirator at this very moment. I started to wish I was crazy instead of having this disease.

After several more tests, they put me on prednisone and signed me up for plasma-exchange. All day long, different med students, interns, residents, nutritionists, speech therapists, occupational therapists- pretty much everyone in the hospital except the cooks in the cafeteria- came to "visit" me. MG is rare, particularly in this extreme form. I did my best to take it all in stride. They were learning from me and I was learning from them. I still have pages and pages of notes on how to deal with living with MG and the benefits and side effects of prednisone. Ahhh prednisone. I could write a book about the lovely effects of that EVIL drug. Instead I now choose to ignore the whole saga of my 14 year on and off relationship with steroids.

Plasma-exchange on the other hand- now there is a treatment that WORKS. It is a miracle for me. The doctors couldn't believe what happened that first time they hooked me up to the machine. (there is a previous entry on pheresis- it explains it all and even has a picture of me hooked up- sunday, april 27, 2007 Hurray for my arms!!). Midway through the treatment, my speech started to clear up. I felt a million times better. Not perfect, or even close, but so much better. Dr. Schotland, who is famous for his treatments of MG, and was most definitely not a young man, came flying to my room to see this insanely fast turn around. The positive effects didn't last very long, maybe an hour or two, but they served to invigorate me. I now knew, without a doubt that I was going to make it through this, and I had a treatment that would keep me healthy. The docs at HUP removed my thymus gland (involved in the development of your immune system, but should shrivel to nothing in early childhood) and told me I was eventually going to get it all worked out and find a treatment that would work long term for me. I had no idea that would take this long, but...

The story goes on from there... plasma exchange is not a long term solution. It is something that works when a patient is in crisis, holds it's own risks and isn't all that convenient. 5 exchanges remove approximately 90% of the antibodies causing the symptoms. Being as special as I am, I respond very quickly during the first 2 exchanges, and then my body seems to "make up time" and goes even more haywire than it was to begin with, so I do very well with 7 exchanges, rather than 5. Given that the pheresis can only happen every other day (because they take out good stuff along with the bad stuff), I spend at least 14 days in treatment to get about 3 and a half weeks of feeling good before the antibodies start to take over again. So plasma exchange was out for a long term answer, but is great for me in a crisis.

So the different drug therapies began to be discussed. I've been through many, many courses of months on steroids getting me well enough to try other drugs that haven't worked. Ephedrine, Imuran, Cell Cept, Cyclosporin, IVIg, the reintroduction of Mestinon... all with some hope, only to have our dream of me being healthy destroyed, or delayed (?) again and again. Ask my family, ask my true friends. I have felt sad and angry at times. I have NEVER EVER stopped believing that this drug, this treatment, this positive thinking and energy flowing through my body is going to make me well.

We tried everything there was. Many of them several times. Last year we finally got to the point where there was no other choice but to completely destroy my immune system and start over. An immune system overhaul. A rebooting of my system. So we tried chemotherapy. Every single treatment I have tried, I have believed would be the answer. This time I not only believed it, it had to be. We were kind of at the end of the road. If this didn't work, we weren't sure where we would turn, and Jason and I were pretty wiped out from all the years of me being in and out of ICU.

And here is where my superwoman complex comes in. You see, I need to be well. I need to believe that I can handle anything thrown my way. Not all on my own, of course. Somehow through this, I have a fantastic marriage, 2 insanely cool kids, a great little pug dog and a cat who loves me so much she keeps me awake many nights looking for a hug. Having wonderful family surrounding us and awesome neighbors and friends has made all of our burdens so much easier to carry. All of the positive energy and prayer that you all have shared with us over the years has been one of our greatest blessings, and I am certain that it is one of the biggest reasons I am doing as well as I am right now. Thank you all.

At the moment, I have completed 8 monthly treatments of Cytoxan. Initially they told me that I would be given a low dose. Turns out I got 2-3 times the dose a lymphoma patient gets. Still, I am amazed. I have at least 2 more years of chemo remaining, but now it is once every 3 months instead of monthly, and next year it will hopefully be once every 4 months. And I have hair!! How cool is that? Head of hair aside, I am infinitely better than I have been. Everything is easier. I still have to go in every other week for 6 hours of IVIg and lots of trips to the hospital for blood tests and check ups. Now when I am feeling good, I am actually doing well! I am swimming again, not resting every day (many days, but not every), and truly taking care of my kids and my husband the way I always imagined I would. I planned on the chemo being a cure. So far it isn't- but we still have a ways to go, and I am thrilled with the results so far and know that we can only get better from here.

Prayers for my Mom

Hi everyone,

I know I haven't been great about keeping everyone informed about my health. Let's face it, we all have our own stuff. Our family so appreciates that everyone has kept us in their thoughts and prayers all these years. Tonight I ask everyone to please include my mother in your prayers. She is going in tomorrow morning, Monday, at 7am for eye surgery. I truly believe that your prayers and positive thoughts have helped me come to a place where I can safely be alone and take care of my children. I no longer wonder where I will get the strength to breathe, walk, eat and take care of my family. A huge part of that I attribute to all of you wrapping me in my blue blanket of warmth and love. Please share some of those powerful thoughts with my Mom tomorrow!!!

I will write more and post some pictures as soon as possible. Tonight let all your prayers go to my Mommy. Please take the time you have been so generous to give to me and share your heart and your kind thoughts with my mother.

All my love to you. Claire

Back to the Grind

It has come to my attention that I have been neglecting to fill people in on my health, which was the whole purpose of this blog way back when. As I have said before, I just don't really feel like talking about it lately. Since you all have been so wonderful about sending me your thoughts and prayers, I need to let you know what is going on.

The chemo has significantly improved my health and our lives. Unfortunately, it wasn't the cure I was hoping for, as I am still going in for IVIg twice a month. The thing is, I am so much better that I am not complaining. For example, Monday morning, I took a bike ride with Thomas on the back of the bike- 5 miles! By that night I knew I needed to get in for treatment. So all week last week I was swimming almost a half a mile every day, and I was good- feeling good, able to be Mommy, cook dinner, do the laundry, be a good wife and keep my general level of insanity low :) Ohhh don't I sound so domesticated? That is pretty funny. Not at all how I would describe myself. Oh well I am pretty sure my life is way more than the textbook description of full time mom (definately a topic for later discussion- like anyone should have a textbook description of what it is to be everything to people other than yourself).

So I have a choice. Do I continue to live my life the way I want to- playing with the kids instead of napping, working out, going to the occasional party on a Friday night or a neighborhood happy hour on a Wednesday afternoon- or do I become overly cautious and constantly worried that the symptoms will come back and I will have to go back for more IVIg? Pretty clear choice to me. I am tired of being a sick person. Now since the chemo I don't have to be anymore. People are very fond of telling me not to overdo it. God Bless my parents and Jason.... they get it. They just say how proud they are of how I am doing and how exciting it is that I am swimming again. I am sure they are worried- they love me after all!!! They are just putting the positive out there for me. Everyone has been so supportive and I am so grateful. Please continue to think good thoughts for me and for my family. This disease isn't gone- but I am thrilled to have it not be the center of my life anymore.

The current plan: IVIg once every 2 weeks (30 grams- which is half of what I had been getting) and chemo every third month for one year. Chemo will likely continue for a year past that at every fourth month. All subject to change, of course. Life wouldn't be fun if we didn't have surprises. Just kidding.

So if you call and I am slurring, please don't be upset. Remember that I am living my life the way I want to now. I am no longer ruled by myasthenia gravis. Six months ago I had to park in the handicapped spots on the days I felt up to going to the store and then I had to go home and take a rest because I was so wiped out. I had to plan when I was going to take a shower to make sure I had enough strength to dry myself off and still be able to make a peanut butter and jelly for the kids. Now my biggest concern is if I swim too hard, will I be slurring later. God has given me a gift- a new lease on life, and the perspective to truly enjoy all that I have and all that I am able to do.

Busy times

First Day of School 2008

Waiting for the bus with Mommy

Thomas waiting for big sister to come home :-)

First Day of Preschool for Thomas!!!

We LOVE Acorn School!!!

I can't believe how long I let this blog go without writing. No wonder I keep getting phone calls asking if I am okay. Yes. I am okay. Thank you all again for your thoughts and prayers, and to those of you who have called. I guess I just got tired of writing. Got tired of thinking about the disease, the treatments- if they are working or not. I took the summer to spend with my wonderful kids and husband. Spent precious times in Wolfeboro with my parents, and down on the cape with Jason's parents. We had lots of fun activities going on when I was up to it- which was a lot. Certainly more capable than I have been at anytime in the last 4 years (actually the last 14 years). It is hard to believe that the best I have been is while I am in the middle of chemotherapy. That thought keeps it all in perspective for me.







We have really just been enjoying it all. Jason and I don't really talk about the MG much. Not that we ever did. As I have said before, regardless of how things are with my health, we pretty much always have just said, "fine, we are fine. Thank you". In reality, we are fine. We have a great marriage, great kids, great family supporting us and excellent attitudes- if I do say so myself. So the myasthenia is still here with us, but it doesn't rule our lives, and I have spent many long hours making sure it doesn't define who I am. There have been many times when I have felt like that is all I am- a sick person- but I am not that, in fact that is probably the smallest part of who I am. Those have been the hardest times for me. Most of the time I am uber positive. When I am not, I get so mad at myself. But hey, I am human after all. There are just so many good things to think about, why would I dwell on the bad stuff?







So to fill everyone in on my health, I did need to go in unexpectedly last week for an unplanned IVIg- but I am not concerned. The previous IVIg was only 30 grams (I had been getting 60g every other week). We were hoping to make it 30 grams once a month, and I made it to 2 and a half weeks. Plus it was a stressful week (happy but stressful) putting our little girl on the bus for the first time and sending little Thomas off to preschool for the first time. So far, this week has been much better. The kids love school, and I have even been able to get back in the gym! I just got home from swimming a half mile- my goal is to make a mile in one hour by next week. Today was half a mile in 25 minutes. I think I can do it!!! No- I know I can do it.





Thank you all, as always for all your support. Your prayers are the biggest reason I am doing as well as I have been. I will be eternally grateful for all the kind thoughts.

Irish Fest by the Sea

Katherine and her classmates did a wonderful job in their Irish Festival! Here are some photos of her and her friends.

Thank you Miss Anne, Miss Jessie and Murray Irish Dance Academy! http://www.murrayirishstep.com/

Thanks for the prayers

Thank you all once again for including me and my family in your thoughts and prayers. I had chemo on Friday, and it went as well as I could have asked for. I was a little down going into it, to be quite honest. Having had a little set back and needing to go in for an unplanned IVIg was a real downer. It is all a matter of perspective, though, and I just had to take a second to think about what kind of shape I would have been in last year if the same circumstances had occurred. I don't need to go into what happened. Really it was no big deal, other than being a blow to my spirit.



Friday morning I got ready to go in to the hospital for my chemo, and I was really feeling like just calling it off. Not that I could or would ever do that. I just didn't even feel like putting on my superman shirt and going in for yet another treatment and I had a few doubts that it was even going to do anything other than make me sick for days. I even mentioned to Jason in the morning that I was having a hard time facing the chemo. Most of you know me and know that I rarely get in a zone like this where I am not telling everyone, "oh, don't worry, I will be fine". I have been in ICU telling people not to worry about me that I am fine. LOL And the thing is, I always truly believe that I am going to be/ am getting well.

At just about 11:10, I suddenly started feeling my normal positive self. I believe that all your good thoughts hit me right about the same time. On top of all that, my wonderful husband showed up half way through with a big bouquet of daisies for me. Does it get better than that?

Something New!

These are some photos from our recent trip up to North Conway to meet and take a ride with Thomas the Train! The kids were so thrilled with this wonderful adventure that Nannie and GrandDad searched out and treated the whole family to! (I am putting my money on Nannie being the primary researcher of this one!) Thank you Nana and Grandy!!

If you are a subscriber to the blog, I am not sure if you will be able to see the video through your email. Please visit the website at http://www.clairedenton.blogspot.com/ if you can't see it in your regular email.

Thank you all for your continued prayers. The heat is really doing an number on me, and Jason and I are just doing our darnedest to keep positive and remember that the summer has always been hard, and if it were this hot and humid last year, I would have been hanging out in ICU. Now I am pretty much living a normal life of a mom of 2 with a very busy, extremely loving husband who cares for us all dearly but still has to earn a living! The darn MG has popped it's head out in the last week or so, but things aren't getting significantly worse, so I am just going to hang in there. Dr. Logan will be getting a call, and Exeter Hospital will have a happy little visitor this coming week if things don't improve tomorrow. I have been doing so well, and it is hard to see any backslide, but we need to stay positive. This chemo is going to work. Maybe it will take a little longer. Maybe I just need to be honest about it not giving us a cure, but making me better. I still want it to be a cure. I plan on it being a cure. Why not plan on a future where the hospital and all the drugs don't decide my hairstyle? :)

Chemo Brain

I am not kidding... I had no idea that I hadn't written in so long. I am forgetting everything these days. In fact, I have lost lots of things, the most important of which is my brain. I wake up pretty much every morning and think, "Now what the heck happened last night"? Combine that with the nausea and headache, and I am going through life feeling like I have a constant hangover. Unfortunately, I am not having the fun that usually comes the night BEFORE the hangover! ha.

There are several reasons why I haven't written.
1. I hate to complain.
2. As I have said in the past, when I am feeling sick I don't really feel like spending time on the computer, and when I am feeling well, I want to be going out and doing fun things with my family.
3. We got a new camera, which I love, but I haven't quite mastered downloading the pictures yet, and I hate to post entries without pictures :)
4. July has been a very busy month! I am just going to fill you all in with pictures rather than words.

I am working on setting up a slide show on the blog site itself. I know lots of you just get the emails and don't need to check the site itself, so I am going to try to put a slide show in an entry- not just on the site. Stay tuned for more updates!

Now that is a look!

Daddy's Girl

Mommy's Boy

Lots of love here!!!

Katherine climbed her first tree.

Snuggles after a busy day.

Surrey with a fringe on top.

Fun on the lake at the Cape.

Summer workbook in "Roger" the camper.

Kate's orientation day at SMS.

Father's Day at the Seacoast Science Center.

Lunch with Daddy up at the base.

Our annual family photo at the Cape.

Look, I am a whale!!!

Family Adventures

The beginning....

and the end!

We are having such a wonderful time with our camper. We haven't been able to get away since Memorial Day weekend, but the kids love just climbing around in good ol' Roger. Yup. We named the VW camper Roger. Somehow the name just fits him. The best feature about Roger is that we have told the kids that there is no crying in Roger. He just doesn't like it. That is a wonderful thing!

My health is steadily improving. I saw Dr. Gorson last week, and he is very pleased with my progress. I have one more monthly chemo, and then I will have 6 treatments every other month. Plus we are combining the IVIg so I get the dose I used to get over 2 days all in one pop. I am sitting here in the hospital this very moment as a matter of fact. I am not sure why I never thought of bringing the laptop to the hospital before. Except for the fact that I am doing my darnedest to keep my eyes open after taking the benedryl and zofran (anti-nausea drug) and am not even all that sure what I am writing about. I better stop writing before I say something I won't remember writing about when I come out of this drug induced loopy state.

Thank you all again for taking the time to keep us in your thoughts and prayers. All the positive energy everyone has been sending my way is more healing than all the drugs in the world.

Chemo Again

Off the Kancamagus Highway, Memorial Day Weekend.

Spiderman/Batman opens his gifts.

Katherine's last day at Acorn School :(

Jason at the Grand Canyon this past week.

Well, time has been flying. I don't know where it goes. This week seems to have been absorbed by the high temperatures and steamy air. My 35th birthday flew by in a blink. Jason had to leave for a week the day before my birthday, but he gave me a very special, thoughtful gift the night before he left. Everyone was concerned that I have a good day, and I did. Jules came up the day after my birthday and we had a spectacular meal right on the water up in Kittery. Honestly, we shared the most delicious sandwich I have ever eaten in my life. Decadent.

Wednesday was my actual birthday, and I was kind of down about it. As I said, Jason was away and I had to go into the hospital for IVIg. My wonderful parents and children threw me a lovely surprise birthday party when I got home. Normally, I call when I am leaving the hospital, but my cell phone somehow didn't get plugged in the night before and so it died and I didn't call. I walked in the house to little Thomas standing in the middle of the kitchen, "AHHHHH, ummm, MAMA! ummmm, ummmm, SURPRISE!!!" and saw Katherine run and grab something off the counter and take off for upstairs. Ha. So I knew they were up to something. My folks insisted that I go upstairs to lay down for a bit, and when I came back down, the dining room was all covered in streamers with fragrant flowers cut from my yard as the centerpiece. There was a big pile of presents, a huge pot of sauce and meatballs and ravioli. The kids each chose a gift for me- a pair of slippers from Thomas and a "chapter book" from Kate. The phone rang all through dinner with people wishing me happy birthday, and my inbox was full!

Thank you to everyone who helped make my birthday so special. It is an honor to be included in everyone's thoughts and prayers so often, and I am touched by how kind and loving those who are close to me are. It amazes me how good, kind and generous even people I barely know have been to me and to my family. This journey I have been on for the past 14 years has been extremely trying, but it has been enlightening as well. We have certainly been touched by God's Grace.

On that note, if I could ask you all once again to please wrap me in a blue blanket of love on Friday. (Please see blog entry: Chemo Tomorrow from March 20, 2008 for the template on the guided imagery). I have this chemo and one more monthly treatment. After that I will be moving to every other month, every third month, every fourth month, fifth and sixth until I no longer need the IVIg at all. At least that is the current plan of action. I won't say that chemotherapy is fun, but it is certainly far better than how I was feeling before we started. I am tired, exhausted sometimes, but then much more energetic and full of life than I was before we started at other times. Unfortunately, I am usually completely wiped out at inopportune moments, like yesterday in the middle of Thomas' 3rd birthday party. Once again, I had my eternally giving and amazing parents, in-laws and husband to help with the party, and my little goggle man was just happy to get more masks and balls and to eat cake. And Katherine was happy as could be playing in the little pool and on the slip and slide. Seeing their shining faces is enough to inspire the sickest person to get well- and stay that way!

Chemo Rocks

The new family vehicle!!!

How cool is that?

Katherine lost her first tooth!

I sent an email to a good friend the other day explaining why I have been out of touch the last few weeks. When things are bad around here, I sometimes just don't have the energy to talk/write about what is happening. Of course bad things turn around, and then I am feeling so good that I just don't feel like talking/writing about what is happening! I guess I am just tired of the whole mess. Darn it is good to start feeling better, though! Chemo rocks.


My doctors are finally agreeing with me that I am getting better. I had chemo last Friday. I am so grateful to everyone who continues to wrap me in my blue blanket of love. Positive energy is exactly what I need. In fact, I stayed on top of the nausea this time by taking the meds before I felt sick instead of after- huge improvement. I am tolerating the chemo very well, and thankfully for me, I actually feel less ill than I did on some of the other meds I have taken over the last 14 years. The fatigue is pretty insane, but since the MG is better, I am doing fine with that. It is all relative. I am certainly not saying chemo is a walk in the park, but I have gotten a lot of perspective on how truly sick I have been in the past.


The plan is to stick to the 2 IVIg treatments every 2 weeks for a month and then reassess. We don't want to push too hard and then end up back peddling. Both Dr. Logan (neurology) and Dr. Buff (oncology/hematology) see my improvements and are very pleased with how I am tolerating the chemotherapy. The biggest issue is when my blood counts drop- they really bottom out! So I have to be extremely careful 2 weeks out of the month (and just plain old careful the other 2 weeks)! I can't wait until it is safe for me to eat salad and fresh fruit again- the risk of bacteria is too big for me right now.


Last Thursday, Dr. Logan's medical coordinator called me to confirm my appointment on Friday. She was all freaked out because I was very out of breath when I answered the phone. I could hear in her voice- panic!!! She said, "oh, claire are you okay?" I was confused for a second and then said, "Oh! I am fine just finishing my 45 minutes on the stairmaster"! I guess I am getting better, huh? As I said, chemo rocks!!!

My Blue Dog

I mentioned in the last blog entry that the kids and I went up to visit my folks last week. While we were getting ready to leave, I was packing up the car and making lunches and a dinner to drop off at base for Jason. The kids were out on the driveway playing, and I was listening and checking them constantly. Here I am at the stove, in the middle of my Swedish meatballs and I hear them laughing away. My thoughts immediately went to how wonderful it is for them to have each other, and "thank God the two of them are getting along- this second anyway"! They were giggling and playing with chalk and the hose. And little Maggie was sitting out there enjoying the warm driveway on her naked belly.

After a few minutes, they come trooping inside holding their hands up in the air like 2 surgeons. "Mommy, we need to wash our hands". If you wet chalk enough, it becomes like paste/paint and makes really bright marks on the driveway (or the house or car, by the way). I was giggling right along with them, happy to see them so full of joy. Into the bathroom they marched and while they are washing their hands, Katherine says, "you think this is bad, wait until you see Maggie!"..... I was thinking, "wait, WHAT?" LOL... I rushed out the door to check on my poor pug. Well, as you might have already guessed- we had one very blue dog. Blue face, blue tail, blue ears, even a blue belly. One very blue dog. There was my poor little blue dog looking at me with those huge pug eyes. You could practically hear her whimpering, "maaaaamaaaaaaaa, they made me BLUE. Please, DO something." It took 4 shampoos to get it all off. I was laughing so hard the whole time my stomach actually hurt the next day.

If anyone ever questions the sweet, calm nature of Maggie, I will be reminding them that the dog just sat there while my silly mischievous children painted her entire body blue. They rubbed their hands in the "paint" and then just rubbed it all over her, so it got all the way down to her little skin! I am still laughing about it. One day I will be telling my grandchildren this story- give them some ideas! Being a grandparent is going to be the BEST!

Yup. The dog is blue. The picture doesn't do it justice. Maggie was hiding the part that was the bluest. I couldn't get her to turn around for me. I guess she was embarrassed.

Katherine in my wig.

Thomas in Katherine's favorite hat.

What can I say... we are a house full of silly willies.

Thank you all for continuing to keep us in your thoughts and prayers. Thomas is undergoing some tests to try to find the source for these high fevers he has been getting for the past 2 months (over 106 at times). And I have been doing okay- heck, I am always doing okay- even when I am in ICU. I have the best family a girl could ask for and that is what matters the most. Think positive and God Bless.

I want to go to the grocery store

On Tuesday, the kids and I went up to my parent's house in Wolfeboro for a sleepover. It was so much fun to be able to go up for the day/night rather than plan for at least a week like we did when they lived in PA. I cried on the way up because I am so happy that they are so close now. Yesterday while we were there, Thomas spiked another high fever. This is the third time in 5 weeks that this has happened, so I have a call into the pediatrician.

The plan for the day was for a morning playdate, and then a trip to the hospital for me for my weekly bloodwork. Obviously the I couldn't bring poor Thomas to the oncology unit, since so many people are immunosuppressed. So I was able to change the appointment to first thing in the morning because they had a cancellation (wasn't that lucky?) and my wonderful husband was able to re-arrange his schedule to stay home in the morning. So I am thinking that I will go to the hospital and then do a quick run at the grocery store while I am flying solo.

Well, my counts put a big stop to that. At the moment, my WBC count is only 1.3 and I am extremely neutropenic.

From Wikipedia: Neutropenia (adjective neutropenic), from Latin prefix neutro- and Greek suffix -πενία (deficiency) is a hematological disorder characterized by an abnormally low number of neutrophil granulocytes (a type of white blood cell). Neutrophils usually make up 50-70% of circulating white blood cells and serve as the primary defense against infections by destroying bacteria in the blood. Hence, patients with neutropenia are more susceptible to bacterial infections and without prompt medical attention, the condition may become life-threatening (neutropenic sepsis).

So I won't be going anywhere until the counts start coming back up. This is the way that I should be responding to the chemo, so it is good news. It is like a roller coaster. I get the chemo and then the counts come down (hopefully no lower than they are now) and then they start to come back up and we hit them again with the chemo. Doing this is what should eventually "trick" my body into an infant state and allow it to rebuild without the antibodies that attack my muscles (the Myasthenia).

As I was leaving the hospital, I grabbed a mask, still intent on heading to the grocery store. I mean hey, it was only 9 am and it would probably be empty. I could wear the mask, wipe the cart with anti-bacterial wipes and scrub myself with hand sanitizer after I left. Upon reflection, I decided against the store! lol. Can't you just hear it? "Kids, Mommy is in ICU because she really wanted to get creamer for Daddy's coffee and fruit snacks for you guys." It just didn't seem to be the right path to follow :) Instead, I will head home to my known entity of a sick little boy. Since I have already been exposed to whatever it is that he has, I am not going to worry about hugging my baby boy. The mask will go to good use for cuddle time today.

Still, I really wanted to go to the grocery store. I am sure once this is over I will be right back to, "darn, I hate going to the grocery store!". Won't that be wonderful? For now Jason will have the honor of buying raw chicken.

Katherine's Feis

Life goes on. No matter what I have going on with my health, I am still my kid's mom. That is my first and most important priority, along with being my husband's wife and being true to myself :) A fairly difficult task, even for superwoman. Most days I manage to juggle it all pretty well.

Katherine has been taking Irish Step Dancing at a local studio, and she just loves it. The other weekend was a big thing for her- her first Feis (Irish Gaelic: a traditional Gaelic arts and culture festival). http://en.wikipedia.org/wiki/Feis
She got to watch many of the older students dance, and then she had her turn. It was amazing, (Mommy says with pride). All the kids got up there and danced their hearts out. I have never been to a Feis before, and I was surprised to see that each student took a turn and danced all alone up there! All the kids in Kate's class did a great job.

At the end, medals were awarded- Kate got 2 gold medals!!! (okay, so all the pre-beginners did too, but STILL!) We were so proud of her. The next day she woke up and said, "You know what Mommy? I have a secret. I was a little nervous before I started to dance yesterday. Then once I started, it was so much fun! Did you hear everyone clap for me?". She was very brave, and it was pretty hard to tell that she was even a bit scared. These are the things that keep life real and fun for us.

Pre-Performance Jitters

Kate's turn!

Look at those feet go!!!

Watching all this dancing wiped Tom out!

Kate's moment in the sun :)

Post-Performance Confidence.
(Nannie is holding the medals- Kate loves them, but doesn't like the way they feel on her neck :)

Bald as Bald can be

Thank you to everyone who took the time yesterday to keep me in your thoughts... My WBC count jumped from 1 to 3 and we were able to go forward with the complete dose yesterday! Just to clarify, I still would have gotten the chemo, we just would have had to wait until the counts were up. In the same vein, my hematocrit (HCT) has been holding nice and strong ever since the surgery, so that is great news as well. Hematocrit, by the way, is the proportion of blood volume that is occupied by red blood cells. My low HCT was the reason I needed all those blood transfusions

I went to see Dr. Logan (the best Neurologist in NH!!!) first thing yesterday morning, and I am doing very well. I am tolerating the chemo fine, and the IVIg is more effective than it was before. I discussed the situation of my myasthenic symptoms having changed so drastically- going from symptoms gradually starting and getting worse over a period of several days to now when something happens and I have a dramatic onset of severe symptoms. Thankfully, the short working medicine, mestinon, also works much faster than before and resolves the symptoms. Dr. Logan and I are taking this change in the pathology of the disease as a positive. We are knocking something around in there. For sure!

So we will be continuing on with the chemo as planned. I will have 6 monthly doses at the full strength (so that made yesterday's my second) followed by full strength doses every 2-3 months until we decide the disease is manageable- or gone. Lets all keep praying for the GONE. lol

Given that my hair has been driving me mad... and everyone around me tired from hearing the endless discussions about it, we took the wonderful drastic measure of shaving it. I am thrilled- and seeing the hair shorter and shorter in the stages of shaving it made me so certain that I did the right thing. There were bald/thin spots all over my head, and it just would have kept getting worse. Losing your hair in the quest for health is nothing to me- and I got a few really cute hats online! Now I can obsess about whether my eyebrows will fall out, too. Just kidding, but keep your fingers crossed that they stay! LOL

The before shot!

Dude, I would have killed for this haircut in high school! Surfs up.

The new me. Does anyone have a lollypop for Ms. Kojak?

One of my new headcovers :)

Another Chemo

Please keep us in your thoughts tomorrow around 11:30. I am scheduled for another chemo treatment, but my blood counts have been so low, that I am not sure if they are going to go forward with it. I must be one of the only people in the world praying to GET chemotherapy. I just want to get all this over with and start back on a normal path. So please wrap me in that blue blanket of love and picture me healthy and well, laughing and running around with the kids and Jason. I have copied the letter from earlier treatments to the bottom of this blog entry for those of you who might need some guidance.

The new me... looks an awful lot like the college me!

In other breaking news: As you can see in the above photo, I finally broke down and bought a wig. The decision was a tough one, but having it is giving me the confidence to go forward and shave my head. I know this sounds wild, but I just want to take charge of SOMETHING... and the hair is falling all over me. Looking at me, you would never know (at least not yet) that I am getting balder every day. I am guessing this is because I started off with like 3 times the hair that normal people have thanks to the cyclosporin growing hair on the top of my head and all over my body. I just can't stand the feeling of hair falling all over me all the time. Waking up with it on my pillow, seeing it on the bathroom floor. This morning I found a bunch of hair in my breakfast. I think that might be my breaking point. LOL As long as I keep a hat on, it is okay- but if I am going to keep a hat on all the time anyway, I might as well get it over with.

Having a hard time keeping my scarves and hats away from Kate the fashionista.

Yup, they are superheros, too!

Dear Friend/Family Member,

You have been chosen by Claire to be part of her support team for her treatment on April 18th. What an honor! Claire's treatment is scheduled for 11:30 am. That means about a half an hour to an hour before, around 11 am, we will all begin a very powerful prayer as follows:
Let your mind go back to a time when you felt a lot of love for Claire. Replay that scene in your mind until you feel the love strongly.

When you feel connected to Claire, as if you were right next to her, wrap her in a sky blue blanket of love for 30 minutes, starting at 11 am. The key to projecting an emotion, for it to be really "felt" by Claire, is to feel strongly connected to her while you send it. It¹s similar to being in love, feeling bonded to the person even when you are not together. It is a linking together, having a sense of connectedness that allows the emotion to be felt. Letting your mind go back to a time you felt a lot of love creates a bonded sensation, enveloping her in peace and love.

After the half hour, you can continue this intermittently throughout the process, so Claire feels the presence of the Presence throughout her treatment. So, Claire, the "forces" are with you, both seen and unseen. God bless you. Love and blessings to all!


Once again, thank you all for your support. Love to you all. Claire

Sabotage

This cracks me up- two of my cousins, Mary Clare and Margo both separately wrote to me on the same day concerned that I would do too much. The thing is, it is just about impossible not to do too much. Pretty much everyone I know who has kids does too much. That being said, I have to put it out there that I am doing my very best here, folks. I have cut our activities by like 95%- and we are being hyper-vigilant about germs and people. I am in bed most nights by 8:30-9 o'clock and I have been doing my best to lay down every day for at least an hour. I don't always write about the reality of what is going on here. I usually write about the triumphs because I really despise the thought of focusing on the negatives.

In fact, I haven't written much lately because I have been feeling like someone who is on chemotherapy. LOL I save my good moments to be with the kids and Jason (and sometimes grab a nice long shower for myself) rather than take time to write and sound like I am complaining. Because I am not complaining... This is working and it is a long road to travel, but I am going to get there. I am once again speechless at all the kindness people have shown us. One of my neighbors, Ellen, has been an absolute gift from God in the past weeks, taking the kids all the time so I can lay down or go to doctor's appointments.

My symptoms have changed, and I am taking this as a good sign. Everyday is a different ballgame. In the past, the symptoms would start out and increase over several days until I got myself into trouble or got some IVIg or plasma exchange. Recently, they come on strong and fast. The other day I was out walking with the kids, and I felt really good. In the blink of an eye I couldn't walk anymore. LOL I had to drag myself and the stroller and Katherine's bike home. I am sure the kids and I were quite a sight. Next time I am going to stop at a neighbors and ask for a ride home! When it happens, though, it is hard to think like that.

Yesterday I had a similar issue right in the middle of my IVIg treatment. I was just sitting there and I noticed that my lungs felt like I was breathing in the coldest air on the planet. My speech became slurred and thick and I could barely swallow. Ahhh details, details. Sorry. Anyway, my fantastic nurse, Cindy (she is also one of our neighbors) suggested Mestinon- and within 20 minutes the symptoms had resolved. Here I was thinking I was having a reaction to the IVIg and it turns out it was just the ol' Myasthenia rearing its angry head. So I have to go back to walking around with mestinon in my pocket, even in the house.

Again, I am taking this as a good sign. As far as I am concerned, the fact that the pathology is changing means we are stirring something up in there. So we keep going, and keep smiling. And if you see a masked woman in the grocery store, don't run the other way- it might just be immuno-compromised me!

The Masked Wonder

Not quite yet.

My Hero.

The sun finally shines in NH

Preparing for the Beach

Well, I really thought that things were so fantastic. They are. Kind of. I have improved. No question. In my mind, in my physical exams, I am getting better. That just makes it such a bummer when I know that I have to go back tomorrow for another unplanned IVIg. I was so hoping that skipping Wednesday would be just that, a skipped treatment. I wasn't planning on it being a postponed treatment.

The thing is, as I was saying to Jason, this is still good. We still have to stay positive. I didn't start showing symptoms until the night before I went in for my last IVIg when in the past I would have had a hard time at least a week before. That in itself is a huge stride. Keeping perspective is particularly difficult when I have seen such a huge improvement (it might not seem huge to you all, since I look "fine", but it is huge to me!). Jason and I would like to just see me jump right back into being normal. Not that we remember that all that well, but that is what we want. So any status-quo or slight improvement isn't good enough. It should be, but it isn't right now. We have fought for so hard for so long, and slight improvement isn't going to cut it.

Is it slight or is is huge? I don't know. It feels really huge, but that is the thing with MG. There are times I am FINE. Or close to fine. My version of fine? "Okay, I will leave the house today" fine. My fine is being able to not use my handicapped parking pass. Walking around the block without limping or getting out of breath. I don't know. I hate the idea of people thinking, "oh, poor them". That is just so not me, not us.

Hey, I strive for perfection, and I plan to get it. I will get it. We are on the right road, we just aren't there quite yet.