Heidi's January 22d Update

Well I am sorry it has taken me awhile to write an update. I have not been able to write because I didn't find out news until yesterday afternoon (torture) and then I had such a bad headache and had a trip to the temple planned that I wasn't able to get on and type. I hadn't slept hardly at all the night before too so last night I was just wiped! So sorry!

Here is the update on me:

My Dr. didn't call me Thursday because he really isn't sure what is going on with me. That is comforting isn't it?? =) He wanted to get some other opinions before calling me back. His main concern is how much swelling has appeared on my scan since 3 weeks ago. It's really surprising him. Usually after radio surgery (and I've had three) swelling isn't seen until 6 months after surgery. My last surgery was in November and at the end of Dec we are already seeing swelling. This doesn't follow the textbook at all! So once again I am leaving the Dr.'s with questions.

For now I am on steroids to manage the headaches and as much as I HATE that drug I am so grateful for it too as it has made life worth living again...I was in SOO much pain for several days! I am also on anti-seizure medication down from 3000 mg to 2000 mg which keeps me from having grand mal seizures but also allows me to function. On 3000 I just couldn't stand the headaches. Yes....two things cause headaches right now...one is the swelling and the other is my medication so it is a double edged sword!

On 2000 mg I have a lot of seizure 'noise' so I have to be careful of what I do every day and try not to overdo it. But I just couldn't stand being on 3000 mg..I'd rather have small seizure episodes and be able to function so that is a decision my Dr. confirmed with me yesterday. I have to titrate between symptoms and side effects. For today I am doing well with it.

A few other issues, I have lost probably 75% of my feeling in my foot and it extends up my leg in varying severity depending on the day. I am grateful for good days when I can walk more. My right eye is very affected, I see double vision and my eye gets tired and its hard for me to read sometimes. I couldn't read for several days, Kaylie did some for me, and Scott, as my eye was going into spasms too much. I haven't had a seizure in 3 days and today my eye is better so I can see that that is directly affected by it. Another new issue, my hearing is affected now sporadically I lost hearing in my right ear. All of this is textbook for my Dr. He said he is surprised that I didn't have more of these symptoms back in July. After all they were expecting more vision issues then. So I can count my blessings there.

He said the trauma to my brain is hitting harder right now because the swelling is just a whammy to what has already been seriously damaged. All the symptoms may be harder for me to handle now that my brain has been through so much. There is still much we don't know...my Dr. feels that in March we will see a clearer view of whether I am dealing with new growth or primarily swelling. We know there is new growth but the amount is up for debate (swelling vs. growth...only time will tell)

My Dr. is cautiously optimistic that the surgery still may work but said we will have to take it a week at a time and see how I do. He said my symptoms will speak volumes so I am grateful for better days. On days I don't have seizures I can type, spell, think and accomplish things and its awesome! I'm grateful I'm even well enough to post on the blog! For now my Dr. said to go enjoy our Hawaii trip (We go in 2 weeks) and I'm hoping for good health to carry me through this much anticipated vacation with my family. Thanks to all of you for your support and love as I continue this battle with cancer. I'm grateful for the little things in life more that ever and for the friendship that I have with each of you!!
Love and Hugs,
Heidi