On my way

I received treatment yesterday and I'm on my way to Tucson!

Blizzard

So this blizzard we are having is causing me all sorts of problems.  We are expected to get about 2 feet of snow.  My treatment was originally scheduled for Tuesday but because of the storm we had to change it to Wednesday.   Depending how much snow we get and Boston gets we might not be able to make it there on Wednesday.  This means that I then cannot leave on my flight Thursday (if my flight is even still existent and leaving as scheduled).  So wish us luck with all this snow, but if this is the biggest of my problems right now I think I'm doing pretty well :)

Are things Taking a turn?

I have had some really good days lately.  I found myself actually feeling like a normal person.  I usually need help running simple errands where I don't feel well enough to drive myself but this weekend I even did errands alone.  I went to church and really enjoyed seeing everyone and was able to go with the kids to a birthday party amongst other things.  I saw someone running this weekend and thought to myself maybe that will be me some day if this good streak continues.

I am heading to AZ in a little over a week and I hope I feel this good to travel.  I really hope things have taken a turn for the better I could really get used to this!

Had a good one, finally

I prayed and prayed and finally feel like my prayers were answered, I had a good day today!  I had a great night's sleep.  I also went for a walk, did yoga and was able to do one of my favorite things, bake and even do it with my kiddos.  I Had a good day and just wanted to share that!  They are rare these days, in fact I can't remember the last time I felt this way!

Treatment tomorrow

Everything is lined up to get treatment tomorrow.  My theory on the vision is that it is the pills I take for my cramping.  I feel like the blurriness started when I started to take those and got worse when I doubled the dosage as prescribed.

I had a rough weekend symptom wise with pains and also having more vision problems besides the blurriness.  When the symptoms get worse my spirits tend to go In the same direction.

My son has been sick and we all know how fun it is to have a cranky toddler!  Ill fill you in if there is anything new tomorrow with my apt.

Eye exam

I had an eye exam today because of my constant pupil dilation and blurred vision.  The drs said they would contact my team and they would decide if I should continue on the trial.  My vision was still good so they didn't seem concerned.  We will see, a little blurred vision isn't a big deal to me compared to everything else I deal with!

My rash is still all over my chest and back and is starting on my face again.  I just started my off week of the pills though so hopefully that calms things down.

Heaven is for real

So I finished the book, 90 Minutes in Heaven" by Don Piper and Cecil Murphey.  It really was very comforting to hear his experience of being in Heaven.  The man suffered a great deal when he returned to Earth.  He went through countless surgeries just to be back here on Earth with us when he would have much rather been in Heaven.  I recommend it to anyone, just to read of his experience in Heaven was so intriguing. 

My 3 and a half year old son has been talking about death a lot.  I don't know if he over hears me sometimes or comes up with things on his own but he expressed to me the other day that he doesn't want to die.  I talked to his counselor about this, "what am I supposed to tell him?" I asked her in desperation.   Her recommendation was to reflect back so he knows I heard him and say "You seem really worried about dying.  A lot of kids are worried about that too, but a person usually lives for a very long time until they are very old."    She also told me to tell him (knowing we are a religious family) that he will be with Jesus when he dies in Heaven.  I followed her advice as best I could and his come back was, "oh then I want to die so I can meet God."  What do you say to that??

It was so timely that he came up with this after just reading this book.  It is probably just the situation I am in, but he does make it seem so amazing that I find myself thinking I would like to go to heaven, There is no suffering there and you get to be with God. 

2 Corinthians 5:1-4

I am reading this book called 90 minutes in heaven.  I haven't finished it yet so I will blog more about it when I do but I just read this passage that I had to share with you:

For we know that when this earthly tent we live in is taken down-- when we die and leave these bodies--we will have a home in heaven, an eternal body made for us by God himself and not by human hands.  We grow weary in our present bodies, and we long for the day when we will put in our heavenly bodies like new clothing.  For we will not be spirits without bodies, but we will put on new heavenly bodies.  Our dying bodies make us groan and sigh, but it's not that we want to die and have no bodies at all.  We want to slip into our new bodies so that these dying bodies will be swallowed up by everlasting life.  2 Corinthians 5:1-4

scan results from 12/30

The Dr just called, boy that was a test on patience, it was 6pm by the time she got around to calling.  There was some growth on my liver, actually doubling in size of tumors, however the Dr referred to it as pseudo progression.  She said that it could be because of infiltration of immune related cells.  Basically the way I understand it is that there could be a sort of an inflamation of the tumors not necessarily growth.  This trial allows for tumor growth because that can happen before the tumors shrink.  She said that on other trials I would be kicked off with growth but because this is immunotherapy I will continue on trial.  Also all my other tumors were stable. 

I have developed blurry vision, my eyes are dilated I believe from the trial drug.  I need to see the eye dr next week.  I have been put on new drugs for my cramping and I think that is improving.

It wasn't the greatest of news, I really wanted to start celebrating, but we can do that next scan I guess?  I don't feel sick from the tumors and my liver function was good last time so I am not overly concerned.  I'm also back in the bed, so things are looking ok for now.