And Away We Go

One more picture of me with all my hair!

On my way to my first chemo treatment. That is right... I told you, I am super woman.

An Appropriate Email

I don't usually forward on emails- but this was too perfect not to share with everyone!

There once was a woman who woke up one morning, Looked in the mirror, And noticed she had only three hairs on her head.Well," she said, "I think I'll braid my hair today?" So she did And She Had A Wonderful Day.

The next day she woke up, Looked in the mirror And saw that she had only two hairs on her head. "H-M-M," she said, "I think I'll part my hair down the middle today?" So she did And She Had A Grand Day.

The next day she woke up, Looked in the mirror and noticed that she had only one hair on her head. "Well," she said, "today I'm going to wear my hair in a pony tail." So she did And She Had A Fun, Fun Day.

The next day she woke up, Looked in the mirror and noticed that there wasn't a single hair on her head. "YEA!" she exclaimed, "I don't have to fix my hair today!"


Attitude is everything. Be kinder than necessary, For everyone you meet is fighting some kind of battle. Live simply, Love generously,Care deeply,Speak kindly.......Leave the rest to God Life isn't about waiting for the storm to pass... It's about learning to dance in the rain.



The Last Few Days

I am feeling much better than I had expected to. That isn't to say that I feel like running a marathon or anything, but better than I had expected. I'll tell you, zofran is expensive as heck, but so worth it. Zofran is the most wonderful drug ever created by the way- anti-nausea. I have used it before with my IVIg, and I am so glad that they gave me a prescription to come home with after the chemo. That combined with the compazine made for a very sleepy weekend, but really kept the yucky feelings at bay. The biggest side effect I have had so far is that I am very, very tired. Thankfully, Jason, his Grandma Meme, sister Jules and her boyfriend, Colin, were here to help out with the kids. Does it really take 4 adults to replace one Mommy? Not really, but it makes me feel good to be so needed and missed.

Hairless Me

For months I have been preparing myself to be all bald and beautiful during chemo treatments. Because of the anemia being so severe, they are only going to start me on half the original dose we planned on. We will be watching my blood counts very closely to see if it is enough, and we can always increase the dose as we go forward if needed. I am fine with the decision- although I guess I am concerned that it won't be enough to do the job. Of course one of my first questions was, "will I still lose my hair?". The answer is they don't know. Probably.

All of a sudden I started kind of freaking out. It is like I was so focused on the hair loss that I didn't think about what we are actually doing and all the other side effects of the drug. I have had some time to think about it and I am feeling much better now. The nurses will do a training with me and Jason tomorrow morning while they are giving me fluids before the chemo. Lots of people go through this and I am going to be fine. It is about time something we try works. As my Neurologist said, "it is going to change your life. You are going to be sick as hell, but it is going to change your life". That might not be a direct quote, but that is what I got out of it *smile*. Anyway, I am all for that. Not the sick as hell part, but the change our lives part.

Just to fill everyone in, Tuesday's procedure went just fine. I declined general anaesthesia and went for a local and sedation instead. I remember most of it... but what I remember most was me talking the whole time and all the people in the OR laughing. I am pretty sure I was the queen on inappropriate comments! HA. Imagine that. I felt well enough after to go to Lowe's and Walmart with Jason. Right about when we hit the check out the local wore off. I was like "ouch, why am I in pain?!" I guess the sedation hadn't totally worn off because I seem to have forgotten that I had anything done! Crazy stuff. An endometrial ablation isn't something I would like to do for fun, but it wasn't all that awful, and the sedation did make everything in the world seem really funny for a few hours. Luckily I had my Jason with me to laugh right along and bring me home, tuck me in and bring me hot packs when it started hurting. The kids were happy as could be after spending another day with Nannie and GrandDad. Can anyone ask for more?

PS- Thanks to Chris for getting the music to play on the blog site! I just love it! And Norman, if you are reading this, could you drop me an email to let me know you are okay?
Again, thank you to my parents for always being here. You guys are the best.

Mama, you are the best in the whole world

Ahhhh, one of those moments we as parents live for. Katherine held me after prayers, grabbed my face and told me there is no other mommy as great as me. I am so glad to be here with them. God blessed us with wonderful, loving, sweet children. Thomas is always offering up his hugs and kisses, and the older Katherine gets, the more kind and loving she becomes. They are both angels sent to earth and keep Jason and me centered and focused on what really counts in this world.

THE BIG NEWS: The day has finally arrived. We are going forward with the cytoxan. The phone rang this morning and it was Dr. Logan. He and Dr. Buff decided that if my blood counts were stable today it was time to move on with the chemo. The IVIg is not holding me more than a few days, and we need to get going on this. The anemia is still not resolved, but since we did the Bone Marrow Biopsy, we are relatively certain that it is safe to go ahead. Dr. Logan will be in charge of the cytoxan orders and Dr. Buff will be focused on the anemia and keeping a close eye on my blood counts. We are going to modify the IVIg- giving me 30 grams over 2 days every two weeks, rather than 60 grams in one day every two weeks. There is a theory that the docs are considering that I am just so depleted that any little thing sends me into a crisis situation, either with the MG or with the anemia. Recently we have avoided anything serious because we have been drawing blood at least once a week, usually twice, and I have been getting these big doses of IVIg every 2 weeks.

Curious why I didn't start the blog with this wonderful news? We are all excited about me getting well... but I am way more excited about the fact that my kids think I am the best Mom ever.

Blessings

378.79 miles. 6 hours and 52 minutes. Moving hours away from friends and family who have always been minutes away. Total relocation and new beginning knowing no one but me, my kids, Jason and his family. 1 month, so far, postponement of trip to Colorado. Hours and hours of blissful skiing in the snow capped Rocky Mountains. These are just a few of the sacrifices my parents have made to be close to me. How could I not feel blessed to have such insanely giving and caring and fun parents? They have literally dropped everything and changed their lives so that my family and I could have better ones. By all appearances, they are really enjoying their new lives. I am so grateful for that. They deserve happiness, all the happiness in the world. Thank you Mommy and Daddy. For all that you do for all of us everyday.

I realize that so many of you keep us in your thoughts and prayers. We have been blessed by your gifts of prayers, and by the many of you who have given your time to help with the kids, cooking, or just listening to me or Jason on the phone or in person. We are surrounded by such wonderful people. Family and friends are everything to us. Jason's family brought me into theirs as one of their own way back 14 years ago. They, like my family, are all caring and giving far beyond what I could have ever imagined. Jules is one of my dearest, dearest friends and I am honored to call her sister. Lola and I have an extremely special relationship- calling her Mom is not just an honorary title, I truly think of her as another mother. And Mike, what can I say? I love that grouchy old fighter pilot more than words can say (just kidding about the grouchy, Dad)! We grow closer and closer to Jeff and Geri and their kids every time we are together, and Geri is one of my "people" who I can really let it all go with when all the medical terminology gets me ready to scream.

This isn't even getting into all the awesome friends that we have. All our neighbors, my cousins, the folks Jason works with, everyone at Acorn School, my friends from as far back as elementary school.... the list goes on and on. Gee, I wonder if the 2 units of blood that I just got came from some extremely sentimental people? Or maybe just the fact that I am getting some oxygen to my brain for once has me thinking how happy I am to be surrounded by such excellent people. God really knew what he was doing putting us in the paths of each and every one of them.

You know, I was thinking about it. Doesn't the human body have only like 8 pints of blood in it? And is a unit of blood a pint? Well, that means that since I have had 8 units, I guess I am a whole new person. I am sure my logic is off, but I love thinking about it. Oh the possibilities!

Perspective

I wonder if I was starting to feel sorry for myself. Perhaps I was just embracing the reality of the situation, as my dear cousin MaryClare suggested. I have been positive about the whole thing for so long, and I just got tired. I got tired of always saying, "Oh, I am ok. I am fine. Really", when I really didn't feel so fine. I mean, I have always been fine. My baseline doesn't feel like I want to, so when I am feeling bad, I don't even notice it most of the time. I suppose that is why I often do too much. You can call it denial, or stupidity, if you care to, but I think it is just survival with a smile.

You know what? We all have our own stuff. We all have burdens to carry. This is just one of ours. It has been the unknown that has made things so difficult lately. Add that to all the regular stuff- bad colds and a terrible stomach flu that literally left me unable to remove my bum from the couch for a full 12 hours other than to sprint to the bathroom- and you have a recipe for grouchiness. Hey, I know people who just had the stomach flu and were grouchy as hell. But who knows what other burdens they stuck with. I am certainly not judging.

I went in on Friday for another IVIg, and as usual, the ladies took fantastic care of me. I am telling you, one of the things that makes this disease easier to live with is being surrounded by such caring and intelligent and QUICK health care professionals, many of whom I now call my friends. The very second I tell one of them I am feeling strange in anyway, they move like cheetahs to get me so meds to stop it. It makes you feel like a very loved and well taken care of baby animal. Odd analogy, but it is a good feeling.

Yesterday was a little tough, because I went into see Dr. Buff with very high hopes that he would see me and see my blood work and say, "Ok, we are all set to start chemo this Friday". I had my folks all lined up to take the kids for the day and I have been cutting my hair fearlessly for weeks in preparation for the beginning of cytoxan. Oh yes, folks, hearing that you will likely lose your hair (or most of it) makes you very brave with your own scissors- it has been extremely liberating! Unfortunately, my visit did not turn out as expected. When the ladies drew my blood, my heart started to sink because they put the type and cross bracelet from the blood bank on me right then and there, "just in case". Didn't feel like a good talisman. The nurse led me to my room standing right at my elbow, again, "just in case". They must have thought I was going to collapse right there on the floor or something! lol. Once they filled me in on the numbers, I guess I understood. I am not going to get into the specifics, because honestly, I have a hard time keeping them straight, and I don't want to get the wrong info out there. They were all low. Low enough that I was not permitted to leave the hospital, but went straight to get another blood transfusion. Yup. Your friendly neighborhood vampire has returned.

I Did manage to escape to get up to the cafeteria and grab a huge burger- in the hopes that it would somehow miraculously change my blood counts! I then hit the gift shop and grabbed a gently used book so I would have something to do for the next 5 hours. Today I am feeling much perkier, and I can't stop grabbing my kids and kissing them. Have I mentioned how cute both of their bums are? (They will probably kill me when they are older for having said that, but it is true).

I have probably blabbed on enough for now. We are still waiting for more results to come in- Dr. Buff isn't happy that this happened, but he is glad that he is on the case. The last time my counts came in this low, he wasn't in the picture, so we never really figured it out. Hopefully this time it will be different. We have some ideas about what is going on, but nothing definitive yet. Until we have some answers, the chemo is on hold. One step at a time. It is likely that this is being caused by a combination of things, and we certainly don't want to add another factor to the mix. Jason and I have great confidence in my doctors and nurses, and we know that as long as we all keep working together we will figure this out, I will start chemo, and our lives will be changed forever. It is all a matter of perspective.

2008- A New Beginning

My only resolution this year: To be healthy. I am going to get there.

Today I am going in for another IVIg. Thomas has been on and off sick all week with a stomach bug, so it is really breaking my heart to be away from them today. Katherine will be a school, so she won't miss me much. It will be nice for Thomas to be alone with Daddy in the morning and my parents this afternoon. New and different people to help him build more train tracks!

We are looking at a goal of starting the chemo next Friday, January 11th. I know it sounds odd, but I can't wait. I am so ready to start living my new life- sans MG.