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!!!