Merry Christmas

During this holiday season, I love to reflect on what the past year has brought to our wonderful family. We are blessed in so many ways. Certainly there are bumps in our road, but that is just who we are. Somehow I usually manage to be a strong optimist. My theory is that the glass just HAS to be half full. The only way something can be half empty is if it was once full and someone forced it to change. If the glass had lip marks or lines from the liquid, that would mean that someone had changed the liquid in that glass. It is my goal to not let anyone, anything, including myself, change my state of being to a half empty kind of person. Being happy isn't just something that happens. Sometimes we have to make it happen. Life is all how you look at it.

Thankfully I am surrounded by wonderful family members, awesome neighbors, and fabulous friends. What more could I ask for? Certainly it would be great to be in remission. That being said, I am probably the best I have been in 5 years or so. I am still taking Cell-cept (an immunosuppressant) 2 times a day, Mestion 3 times a day, and I go to the hospital just about every 2 weeks for solumedrol (IV steroids). We keep trying to get me off the steroids, but so far not much success. Anytime there is anything "extra" in my life, all the symptoms come back. Being a mommy, wife, friend, sister, daughter- human being- pretty much means there is always some thing "extra" going on! So would I change my life? Absolutely not. I would love to modify the MG- but still, it is part of who I am. It is getting much easier to manage it, and I am so glad we did the 2 years of chemo. I am absolutely certain that those poisons changed something in me- made the MG so much more controlled. I continue to pray that I will improve and live my life without meds and trips to the hospital all the time. Our doctors and nurses are some of the most wonderful people I have ever met. I don't know how I would be continuing on without all the love and support that I feel. I thank each and everyone of you for all your love, support and most especially your prayers. God is listening. I don't know what He has in store for me, but with His love, and all the incredible people in my life, I know we can handle it.

So I have decided to be a little forgiving of myself this year and not send out Christmas cards. Sometimes being SuperMom takes too much time! We have so enjoyed seeing all the cards come in! Thank you everyone! Next year I will get on it earlier so it doesn't stress me out :) This is the season I think people are the most strained, and I don't want to join in that. The kids are having a great Christmas season. We have had so much fun with decorating, shopping, wrapping! My parents got the kids this awesome advent calendar with little books that come out each day telling the story of the trip to Bethlehem and Christ's birth. Each book is then hung on a little tree we have set out. It is such a joy to see them anticipating the biggest birthday party in the world! Of course they are wicked excited about Santa coming, too!!!

So a quick recap of our year:

Maggie, our wonderful pug, recovered beautifully from her knee surgery. She has even lost a pound and a half. The vet, Jason and I consider this quite an accomplishment, considering she spends her summer days laying in the sun, and her winder days laying in front of the wood stove.

Penny, our geriatric cat, has finally discovered the pleasure of being brushed, so the kids are having a ball with that. It has really helped clean up the house, too!

Katherine is LOVING first grade. She has had a hard couple of months, swine flu, pink eye, another flu (just in time for Auntie's beautiful Vermont wedding). She is a trooper, though. She has become a great little swimmer and is working on perfecting her butterfly. She is also taking piano lessons. I am thrilled with that- maybe someday I will have my own personal accompanist.

Thomas is still having a ball at Acorn school. He also got sick this fall, but he bounced right back. He loves all his friends, and I do too! If he is home alone with me, I have to be barbie all day, and all his stuffed animals come to visit me!

Jason was awarded the position of Chief of Training at the squadron, and though it is a lot of work, he is really enjoying it. He can't wait for his "Christmas in April" out on our new boat. It is in storage right now over in Manchester, and although we love the snow, can't wait to go skiing, we are so eager for spring this year!!!!

Please during this season take some time from all the pressures of holidays and remember why we celebrate Christmas. Love your family and your friends! God Bless and MERRY CHRISTMAS!!!!!

Really?

Sassy Mama!!

It is amazing to me that I haven't written since May! We weren't all that sure what was happening with my treatments, and I guess I don't like to share about indecision and confusion. It was a bit of a tough summer. I ended up having to go in for steroids (solumedrol) quite frequently. Thankfully I have wonderful neighbors and family who were able to help me out with the kiddos. Since I am still so dependant on the steroids, we decided to stop the chemo- the thought is that I have probably gotten all the benefit that I am going to get from it, and at this point we are just putting my body through too much. I am glad that I continued with it, since I am so much better than I have been in the last 5 years or so.

The great news is that we stopped the IVIg too- and my liver functions went right back to normal! So that is a tremendous relief. There was also a concern about my bladder- the chemo can cause all kinds of bladder problems, including cancer. Isn't that wild? That something they use to treat cancer can cause cancer? So after a fun trip to the urologist, I was cleared of that worry. The cytoxan has thinned out the lining of my bladder and caused bleeding, but that should resolve on it's own now that I am off the chemo.

So what is the current plan? I am back on mestinon 3 times a day, and I am going in for steroids as often as I need them. This last round lasted 18 days! That is a new record for me. Over the summer there were a many times where the solumedrol only lasted 3 days. So this is fantastic for me. I am also back on cell-cept, which is a drug that I took about 4 years ago and had some success with. The doctors wanted to put me on another drug, called Retuxan, but I put the bug in their ears that now that the chemo has improved my situation maybe some of the other drugs that weren't cutting it before might just keep my symptoms at bay. It would be so great to not be so tied to the hospital! I love all my nurses and most of my doctors- but I would really prefer to meet them down at Margarita's, rather hanging out with them hooked up to a pump in a sterile room!

Through all of this, I am so grateful for wonderful family, friends, great kids and a fantastic husband. Jason and I are doing our best to live our lives in a positive fun way. Like the song says, "someday I hope you get the chance to live like you were dying". It is so important to cherish the things we have and not get stuck on the things we don't have. Thank you to everyone who has been such a support for me and my family. I will make an effort to write more- I promise!!!

What is up with Claire?

I haven't been myself at all lately. The smile and positive attitude I have always attempted to maintain through all of this has taking a big fat holiday and left me feeling sad, angry and scared a good part of the time. As most of you know, I started what was planned to be a full year of monthly chemo treatments this past February. I went forward as I always have, thinking this time is going to be it, folks! I am going to kick the myasthenia's butt and we will be able to move on with our lives after 14 years of struggling with this damn disease. I had it in my head that this time around the chemo would make me better like it did last time, but that it was going to stick. (Last years' treatments significantly improved things, but I was still totally dependant on the IVIg every 2 weeks)

So far, things haven't been going as planned. I am not much better than when we started in February, and I now seem to be resistant to the IVIg- so I am getting steroid infusions once a week to keep me going. After each solumedrol treatment, I am a different person and can just about pretend I am not dealing with MG. That only lasts a few days, though, and sometimes not even that. Frustrating as hell, let me tell you. On top of all this, there seems to be some kind of complication with my liver, so I have to go in and have that biopsied in June.

I know the title of this blog is my story of LIVING with MG- sometimes it doesn't feel like living at all! It is constant doctors appointments, treatments, worry and the ever present ebb and flow of symptoms. For the first time I felt like I couldn't get out from under all this. I have had moments like this, but this feels like it has been weeks. My awesome friends have all stood by me and listened, and helped with the kids and meals. The other night I had this light bulb moment when I thought, hummm, I wonder if I am feeling so down because of the steroids? I mean, anyone would be down with all that is going on combined with the concern about my Mom's accident (she is recovering nicely- slower than she would like- but very well) and managing for 6 weeks while Jason was deployed. Regardless, it just isn't like me to get into a rut and not be able to get out of it. I haven't even wanted to write, because I felt like it would just be complaining. Over the years when the steroids took over my brain, I have lost some people who were very dear to me because I was so not myself. I become obsessive and worried and angry. Hopefully now that I am aware that this might be a big contributor to how I have been feeling/acting I will be able to manage it better.

I was prepared for Jason to go away. I was prepared for a year more of chemo. I was prepared for all kinds of things. Life just got in the way. We have to keep doing the things that make us "like everyone else" or things will just get worse. I can't stand feeling like a sick person all the time. Or having people judge our decisions and my treatment plans. I get that much of it comes from concern, but again... frustrating as hell. See, I need to do some of the things that other people do. I need to act normal because it is the only thing that seems to keep me from falling into the pit of "sick person". And when I have acted just like everyone else and I end up with symptoms, we deal with that. We can't have our children, Jason's job or my sanity become casualties of myasthenia. I won't allow it.

All in all, I am DAMN proud of all that we have accomplished. I am proud of Jason in all that he does, and extremely proud that he serves our country so honorably. I am bursting with pride over my children and how sweet and good they are (almost all the time! HA). I have wonderful parents, in-laws, and friends. God has blessed me in so many ways. The MG is just part of who I am. Sometimes it is a bigger part than other times. One day it will stop being the central story and become part of my history. It has shaped who I am, driven me to become a better person, and hopefully helped me to inspire a few people along the way.

Tomorrow (Tuesday) I go in for another dose of cytoxan. That combined with the steroid they will give me (decadron) should kick me back into gear. Thank you all for caring, for reading and most of all for loving me. Please send me some of that love tomorrow around 1pm if you can. I am always wrapped in my blue prayer shawl and sit in my green treatment chair picturing myself healthy and strong.

Please and Thank You

Hi Everyone.

I am terribly sorry that I haven't written in so long. Life has been awfully busy for the Denton family lately. I only have a minute and am writing to ask for your prayers and good thoughts for me tomorrow. I am going in for another cytoxan treatment (chemo).

Please think good thoughts and envision me wrapped in a blue blanket of health and happiness starting at 9am tomorrow.

I am going to try very hard to further update everyone very soon, but as I said, things have been very busy, and I hate to be a downer. I would prefer to write more when my smile and positive energy has boosted me back up.

Thank you all for all of your support and love. Claire

Another round

How are you? How are you doing? What is going on? I know I ask people these kinds of questions at least 6 times a day. I have gotten to the point where I don't even know how to answer any of these questions. My current response is "it is always better to look marvelous than to feel marvelous"! How about this one, "I vacillate between extreme joy at the wonderful family, home and attitude I have and feeling crushed and disappointed that I have spent a good part of the last 14 years fighting a crazy battle with my own body." Not that I mind the questions. This is a private battle that is very public. Everyone has been so kind and supportive. I don't know how Jason and I would be managing without the wonderful giving natures of our friends, neighbors and family members.

I mentioned in my last blog entry that we would likely be starting Cytoxan (chemotherapy) again in the spring unless something drastically changed. Well, apparently I need to update the blog more often. I had my first chemo treatment 2 weeks ago yesterday (second round). The IVIg is only holding me a few days at a time. I have managed to only go in once a week for it, but even that feels like a stretch sometimes.

I am set for an IVIg on Friday- we are going to go back to the 60 grams that I used to get before I started chemo the first time. The plan is to give me IVIg every other week and chemo once a month for a year. The last round ended up being a year, but it wasn't always full strength. The first 2 treatments were lower doses because of the mystery of the severe anemia and necessity of all those transfusions. Then I had 6 months of full strength and 2 months off then another dose at full strength.

Dr. Gorson down in Boston thinks that we probably just didn't go far enough in the last round of chemo. We didn't kill off enough of my bone marrow to make the change I needed. I last spoke with him a few weeks ago and he was extremely supportive and almost as disappointed as we are in the outcome of the last round of chemo. At the moment, he is running a clinical trial that I would qualify for- it is for treatment refractory myasthenics (no drugs produce long term remission, i.e. ME). We both agreed that this is not the time for me to try it, because you have to be off all meds for 3 months before you can begin and you have to travel to Boston several times a week for 41 weeks. That just isn't realistic for me right now. I have trouble talking, chewing and swallowing just 3 days after infusions. We don't dare to imagine what I would be like after 3 months of no meds! If anyone knows myasthenics who might be interested and eligible, please contact me or Dr. Ken Gorson at St. Elizabeth's in Boston.

I am blessed to be surrounded by an insanely helpful and extraordinarily talented medical team. In fact, my local neurologist, Dr. Logan, called me before he went on vacation to give me his cell phone number. Who does that? Incredible. As I mentioned, we have a great support system in our friends and family members. Jason, the kids and I manage to make most moments pretty memorable around here, and the house is still upbeat and cheerful as often as possible. We are doing the best we can with what we have been given.

A special thank you to Kimberly, Suzie, Ellen and Margo for all your love, listening and help with the kids the past few weeks. :)

Been A While....

Kate and Tom ski at the Powderhouse!


Dude.


Our lovely little lady.

Okay, sorry to everyone who has been wondering what is going on in Dentonland. I hope you all had a nice holiday season. Ours was very busy and filled with lots of smiles and happy children.

It is time that I sit down and finally write to you all again. At the end of November, things were looking very positive. I was going to the hospital once every other week for 30 grams of IVIg (intravenous immunoglobulin). That is half the dose that I had been getting before the chemo- and back then it wasn't even holding me the 2 weeks. Everyone, including my doctor down in Boston, was thrilled. Although chemo didn't put me into a full remission as we had hoped, I was so vastly improved, that we were, and are, calling it a huge success.

Quite honestly, Jason and I were cautiously excited. It is hard to completely believe that all is well when you have been through as many ups and downs as we have with this disease. The idea of continuing chemo for a few more months was kicked around, but we decided to let things settle down a bit and give my body a chance to start healing. I find it amusing that the one drug that has helped me the most (cytoxan) is something that I need to heal from! What happens is that the chemo destroys a good part of your bone marrow- which is where the antibodies that were causing the myasthenia come from. Our plan was to kill off enough of my cells that my body would be "tricked" into an infant state and my immune system would then slowly rebuild itself- preferably without the myasthenia gravis.

As the holiday season marched on, my immune system seemed to be getting back to normal and all my blood work looked great. The IVIg was still holding me nice and steady. At the end of each 2 week period, however, I definitely felt the need to get in there for my "go juice" as we like to call it. I would start slurring about 4PM on the Saturday before the Monday I was due, and it would slowly progress. The only glitch seemed to happen when I was stressed, overtired or had an infection. If there is someone out there who knows how to avoid those things while raising 2 joyfully active children with a very busy husband please fill me in! heehee

The doctors were still very happy, and so were we. Dr. Gorson down in Boston recommended that I try to lower my dose of IVIg to 20 grams or that I try to space them out to every 3 weeks so we could get a baseline for just how improved I am. Dr. Logan, Dr. Gorson and I all agreed on this plan- I was pushing harder for the lowering the dose rather than increasing the duration, but I was willing to try either one as soon as the holidays passed. Due to a change in insurance, I opted for the change in duration and save our family 4 thousand dollars in the process. Unfortunately, things didn't go well, and I really felt lousy there at the end of the 3 weeks. That was in the beginning of January. I feel like I have been playing catch up ever since December.

Last week I went in 3 days early. This week I am going in 6 days early. I am praying that this will do the trick and get me back on my every other week schedule. Dr. Logan is blaming the weather. I am not so convinced, but I will happily blame mother nature, just so there is someone to point the finger at. I was feeling pretty down about the whole thing... like how is this happening AGAIN? What we all need to remember is how vastly improved I am compared to how I was. Yes, I am still totally dependant on the IVIg. I am taking the kids skiing, swimming, going to the gym for regular workouts, though! Last year that would have been a crazy thing to even consider. I couldn't even make it through the day without taking a rest- often even needing a nap.

So the plan? Hopefully I will get back in my old routine and stay there. Most likely, most definitely, I will be going through another full course of chemo in the spring unless something drastically changes. I could probably push to start now, but that would ruin the ski season plus being bald in the summer way more comfortable than being bald when it is 5 below! LOL Perspective is everything. Jason and I are in good spirits, the kids are all set with our wonderful friends and neighbors helping out when I have treatments, and this is just another bump in the road.

Please keep me in your prayers and envision me wrapped in a blue blanket of health and love tomorrow at 10 am. If you would like a template for thinking of me, please refer to the previous blog entry 3/20/08 Chemo Tomorrow Thank you all for your awesome continued support and positive energy!