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.

Should have seen it coming....

Many of you know me well. I should put a poll question on here. Who thinks that Claire will start getting better and over do it? I am guessing it would be pretty much a 100% that I would. Heck. I kind of believe that I am superwoman after all. Only with a much shorter, much cuter haircut.

Today I felt so darn ecstatic that I was feeling good enough yesterday to skip the treatment, that I got all inspired and gave the kids baths, dressed them up and took them to the mall for pictures. Anyone who has ever brought their kids to the mall for photos knows that this in no small endeavor. Thank God for the power of the Happy Meal.

I am pretty sure both my hands and the kids hands are going to lose all the skin from over use of hand sanitizer. Every time a stranger coughed I was out with the wipes and sanitizer. Forget about coughing. Sent me running for the hills. lol. But it was a good day with the kids. They needed that, and so did I. Won't it be wonderful when I am just tired from going to the mall with the kids? I don't know, do regular moms get tired doing that? When you are walking in that vast arena of bargains and marble floors, all the moms sure look like they are tired.

Tomorrow is my IVIg... and I welcome it. Funny how just skipping one makes me appreciate the strength of the drug. This is intense. I am going to be well one day, folks. No matter how sick I feel or tired I am from chemo, you would have to chop my lips off to wipe the smile off my face.

The Power of Prayer

Katherine is FIVE!!!! Happy Birthday!

Pilots in training

Thomas took this picture. Not bad for a 2 year old!

Thank you all for you warm, wonderful thoughts on Friday and over the weekend. I have some AWESOME NEWS! It is starting to work. Really truly. I am over the moon. I was scheduled to go in this week for IVIg on both Wednesday and Friday, and after discussing it with the doctors, we decided to call off the Wednesday dose!!!! This is the first time in 5 years that we have ever called off a treatment. We have added and added and added treatments and drugs, but never EVER have we cancelled one because I was feeling GOOD! We are giddy with the joy of it.

I do still feel very tired (I am on chemo here lol), but I am not slurring my words, and I am able to catch my breath much faster now. In fact, I went to my most recent appointment and my whisper count has increased beyond my wildest dreams. A whisper count measures the strength of your lungs. You take a deep breath and let it all out. Then take another deep breath and whisper count as high as you can go. Last month was the exact same scenario- I had 2 IVIg treatments (Wednesday and Friday) and saw Dr. Logan on Monday morning at 7am. Last month I was able to count to 12 before I ran out of air. This month, I got to 72 and I could have kept going, but my speech got all slurry! Isn't that wonderful? FANTASTIC.

*for those of you who are trying that right now, please remember that I studied voice for 15 years, and was a competitive swimmer, so my lung capacity is pretty huge when I am well! *

The last few weeks have been very trying on all of us. Now that I am feeling so good, I don't want to re-hash any of it. I am sure one day it will all turn into funny, "how did we manage" stories. It helps that the kids are great communicators. Thomas was able to tell me last week that he was very ANGRY that he was sick and I left him (it wasn't like I was going to Macy's to buy a pair of Jimmy Choo designer shoes- I had to go to the hospital for treatments). And Katherine turned to me the other morning and told me that she was feeling, "very jealous of the way you are holding Tommy and not me at the moment"! They are amazing children and we are so proud.

Thankfully, things here at home are much better this week. At the moment no one is even running a fever, and I haven't had to wipe a nose in several days. Does life get any better than that?

Chemo Tomorrow

There have been some crazy times here at the Denton household in the last two weeks, which unfortunately have culminated in my poor Mother in Law ending up in the hospital with Bronchitis. She has been a tremendous help to us, particularly in the last 2 weeks, obviously to her own detriment! I have seen my Mom do the same thing, and I see it in myself. I suppose many of us mothers forget about our own health when the needs of our family are so great. Please keep her in your thoughts and prayers.

Tomorrow I am heading in for my 3rd dose of chemotherapy. I am feeling very positive that it is making a difference in the Myasthenia, and I feel confident that I am going to be strong enough tomorrow to be given the full dose of cytoxan. As some of you know, I am working on healing from the inside out. I have a wonderful woman, Lori, who has been guiding me through some processes that are going to help me to heal at a cellular level. We are using an awesome book, called The Journey by Brandon Bays.

Everyone keeps asking us what you can do to help... and if you would like to help me, please take some time tomorrow to visualize me healthy and well. Last month, I emailed this letter from Lori to many of you. I thought I would post it here, so everyone who might choose to join in the visualization might have a guide to follow.

Dear Friend/Family Member,

You have been chosen by Claire to be part of her support team for her treatment on March 21. What an honor! Claire's treatment is scheduled for 10:00am. That means about a half an hour to an hour before, around 9:00 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 9:00 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.

"A study at San Francisco General Hospital documented the healing power of prayer. 393 patients in the cardiac care unit were in the study. A computer divided them into two groups so that neither the doctors nor nurses knew which people were receiving prayers. Half were prayed for daily by prayer groups who only knew the first name of the patient while the other half received no prayers. Those who were prayed for used 5 times less antibiotics and had a survival rate that was 3 times better than the control group. If a drug study had these results, it would be hailed, becoming the drug of choice. This study was done by Dr. Randolph Byrd, a cardiologist." ­ - Peggy Huddleston, Prepare for Surgery, Heal Faster

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!

Seriously?

Claire: 2 IVIg treatments this week, chemo on Friday.
Jason: Sinus infection and bacterial pneumonia.
Katherine: Nasty cough/cold and emotionally raw.
Thomas: Tonsillitis and major separation anxiety.

Somehow both pets are healthy. Thank God my mother in law chose right now to come home to help us. Kind of makes you wonder. She planned to come home before they all got sick. And here I am with one quarter of the immune system that the rest of them have, and I am basically pretty healthy. Other than the whole chemo/MG thing. LOL.

We will be fine, we always are. It has just been a pretty terrible time the last few weeks. Wow. Just when you thing you are at your breaking point, another thing gets added to the mix, and you somehow manage to still hang on. I know so many of you have had really tough winters with kids and parents being sick. My heart goes out to you all!!!! And I am once again so grateful to all of you who have helped out with meals. I am so wiped out by the time the afternoon rolls around, that I just don't have it in me to cook. Forget about grocery shopping.

Not that we aren't managing okay. It is just such a gift to have the help and love around us. As always, I hate to worry everyone- that is why I haven't written more often. It is just a tough time. As Grandma Marian always said, "this too shall pass". It will, and we will survive and keep on smiling. The last thing we want is for people to feel sorry for us. This is just our reality right now, and it will all turn around and then our lives will be even better than they are now. Really, things aren't that bad. We all love each other, and we laugh and have fun together all the time- and that is what matters.

It made me sad

It was a rough weekend. Everything made me feel short of breath. On Sunday I decided that I was going to call the second the infusion center opened on Monday morning to get in there for another IVIg. I had one on Wednesday and one of Friday of last week, but I was really still feeling lousy. And a little frightened. And mad. Definitely mad.

I woke up on Monday at about 5 and I was slurring the minute I started to talk. Forget about walking and talking at the same time. It made me feel like I was going to pass out. As long as I was quiet and sitting, I was pretty much okay. Try not walking or talking when you have a toddler and a pre-schooler. lol. "Mom, can I have some milk?" ... "Mama, Thomas is being mean to me" ... "Mommy, please carry me down the stairs"... "Mamaaaaa, we NEED you!!!". It is good to be needed, and loved so much. It is tiring, though!


It was a good move to get an extra IVIg, and Dr. Logan, my local neurologist called for a CBC. On my way to the hospital I was thinking, wait, maybe this is my blood, not the MG. It really felt like the MG, though. Sometimes it is hard to tell. Then I was thinking maybe I had something else going on. We tend to forget that I can get normal stuff, like allergies or colds just like everyone else. And lets face it folks, it has been one long, cold, snowy winter. We have actually done pretty darn well in the average sickness category- again kind of a matter of perspective, isn't it?

Thankfully I started to turn around about half way through the IVIg. It was really pretty amazing. One minute I was all concerned about what I was going to do about the kids that night if I had to stay at the hospital and the next I felt much lighter, and breathing was easier. My blood work came back, and again I am anemic, but not so bad that I need another transfusion. I will have another blood draw on Friday. Jason had to fly that night, and I managed just fine with the two kids on my own. It felt good.

Thomas had been at our friend, Ellen, and Katherine was picked up from school by Geri, my sister in law. All in all a last minute treatment was handled pretty well. When Jeff, my brother in law, brought Katherine home, I went to give him a hug. He pulled back- and he was right. I shouldn't be hugging anyone, particularly someone who has been sick at all (which is everyone during this time of year). I am still learning how to keep myself healthy and strong while we are pumping my body full of these toxins. It still made me sad, though. And now Thomas is sick with a fever and I am washing my hands so often I feel like the skin is going to fall off and trying to hold him enough that he feels better but doesn't make me sick. I am sad that we have to do all this. Sad that my family has to be so effected. Happier beyond happy that this is all going to end one day. This is a necessary journey. I am not sure that we have learned all we can from it yet, but we are getting there.