Flexiblility

Jason and I define flexible. We have to. Things are always changing around here. I don't just mean like I moved the ottoman, either. My last blog entry was last Tuesday, and I was feeling pretty good, other than some trouble chewing and swallowing. By Tuesday night I was feeling anything but good. It happens so fast that I go from basically okay to grabbing for air. Luckily Jason was here with me. I sent Katherine to go tell him to grab the Mestinon, and she says, "oh, Mommy, are you sick? Are you feeling myasthenic?". Pretty big word for a little girl who isn't even 5 yet. It was an odd feeling. I was sad and proud all at once. I really am so proud of my family. The kids and Jason and our parents and siblings are so giving- it is a blessing.

So I did end up getting my breath after a little while, but went in for IVIg on Wendsday and Friday. In retrospect, I should have gone in on Monday as well, but I was concerned that an extra treatment would mess up my WBC count too much and they wouldn't give me the chemo this Friday. It is a delicate balance. Don't worry... I am not taking any chances. But by evening, I am pretty exhausted. If I don't go to bed by 8:30, then I get a second wind and end up with a racing mind. Just ask my parents. lol

I have sent out an email to some of you asking to keep me in your thoughts and do a visualization for me and with me tomorrow, Friday. This past Monday I went to a wonderful woman, Lori, who lead me through a guided imagery of me eradicating this disease- finally being completely well. It was an awesome experience, and I am really enjoying working on it as often as I can. My cousin MaryClare started me down this path, and I am very grateful. If MC were here in NH, she would be my go-to gal for polarity and relaxation! Check out her website (listed on the left side of the blog).

Some photos

The new do.... At least I like it, in case I don't lose it!

The newest pilot in the family.

Trying on clothes for Chinese New Year. Of course she went with the other one... it is pink!

Recent News

There isn't much to report at the moment. Everyday is filled with appointments and bloodwork. We are all hanging in there. Most of the time we are smiling and laughing. For a long time, I have felt like being sick has been my full time occupation, along with being Mommy, of course. My new occupation is getting well. It is far preferable to being sick.

My counts dropped very low last week, and then came right back up. This is good news, it means my bone marrow is responding the way we want it to. The plan is to continue to do bloodwork at least 2 times a week and make the decision the day of my next chemo as to the dose. It looks like we will be able to increase, but who knows. I feel like a bunch of unstable dynamite sometimes. Kah Pow!

Today I have an appointment with my GP to check on how my kidneys are handling the chemo/IVIg mix. And tomorrow we are checking my iron levels and other blood counts with the hemo/onc group. I think I have Thursday off and then Friday is an appointment with my Neurologist followed by an IVIg. Another IVIg Monday. Tuesday is my surgery follow-up plus another bloodcount check. I am tired just thinking about it. You know what? I can't beleive this, but I haven't missed one appointment through this whole thing. Thank God for a calendar in my purse. The offices calling to remind me helps too. LOL. This is all just temporary. I am going to be WELL!!!! In the end, all this will be forgotten, and I will be able to ski and run and sing in the church chior again. And go back to school to finish my interpreting degree! Imagine. Once I am well all the energy that I have been expending on getting better can be redirected. I will be able to do anything! Yippee!!!!

A Fine Line

I haven't updated in a bit. There have just been so many appointments and bloodtests and treatments that I haven't had the time, energy or brainpower to sit down and write anything. So many people have told me that they are keeping up with the blog. Thank you. It means a great deal to me to know that so many minds are thinking of us. I joke about being superwoman, but there is one power that I truly do have: the power of prayer. It is one of the things that is going to make me well- you just watch!

People have been so caring and giving, we feel blessed to be surrounded by great friends and family. The families from Kate's school have been giving us meals several times a week. I can't even tell you what a relief that is. By the time dinnertime rolls around, I am too pooped to think about cooking. If it weren't for these meals, I figure we would have all turned into fish sticks and sweet potatoes. I also made some meals ahead of time, and we have been cruising through those too. One of the most precious gifts I was ever given came from one of Katherine's teachers, Tracey. Her mom made me a prayer shawl that was blessed. I wore it for my IVIg treatment on Friday. I have never been complimented so often on something I have worn. Thank you, Tracey, and thank you Acorn School!!!

The Boring Stuff

As far as my health goes, things are chugging along. It is all one day at a time. I had bloodwork done and met with the Hemo/Onc team on Friday and then went upstairs for my IVIg and then had another IVIg on Monday. Tuesday was more bloodwork and another appointment with the Hemo/Onc doctors. My counts on Friday were higher than they were when we started the chemo! What can I say, I am an anomaly. Dr. Buff said, "you are just special". Darn right I am. heehee. So yesterday all the counts dropped. I have reached the NADIR- low point in my blood counts following the chemo. The good news is my counts have dropped, but not quite enough. This is good news because hopefully we will be able to increase the cytoxan to the full dose. My thinking is this: if we are going to do this, lets get on with it. Make me sick as hell so I can get on with the business of being well. Usually when someone is getting chemo, the doctors give them something to boost their white blood cell count. We can't do that with me, because killing my bone marrow is the whole point. We have to get my counts low enough that we kill off the stuff that is creating the antibodies while not killing me. So even though I am not a big fan of being stuck by needles 2-3 times a week, it is pretty important that we continue to watch my counts very closely. Stick away.

I have to go in again on Thursday to check counts again, and if my red blood cell count goes down any further, I will be getting another blood transfusion on Friday. I had joked in an earlier blog that having had 8 units of blood, I have become a whole new person. What happens when I get another 2 units? I guess I will be even better than a new person. A new person + 2! We knew it was fairly likely that I would need transfusions while I was getting both the chemo and the IVIg, so this doesn't come as a big surprise. I just didn't think it would happen quite so soon and with the dose cut in half. Then again, my counts could bounce back up by tomorrow, and I will end up not needing the blood. This is why it is sometimes hard to write about what is happening- we don't really have any answers, and there is no data to work off of. As my dear friend, Jasmin said, I just have to do all of this, I can't get stuck in all the ins and outs and ups and downs. One day and one blood test at a time.