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