Wednesday, July 9, 2008
Hannah, my 4 year old, finally decided it was time to cut her hair. I donated my hair March of 07 and at the time she said she wanted to do it also when her hair grew out. So today after her bath she announced it was time to cut her hair. We measured and there was enough so I cut it off! I am so proud of my daughter for willing, and wanting to help other! She was talking bout the little girl who would wear her hair as we cut it off. I tried not to cry! It is amazing how a trial can bring out the best in people and bring a family together! I love my children and don't know what I would do without my husband! I am proud of their strength and support! I love you guys!
The Nurse called from the clinic to check on me in the morning and the Dr. called later that afternoon. I also had calls from friends checking up on me and I felt a lot of love and support from them and family.
I talked to my DH about the fertility clinic. We were told before that there would be no way we could have children and that we should get my tubes tied - we did not - and I'm glad because Johns Hopkins said that was not true. But during those 6 months we had talked about adopting and we both felt really good about that. We have 3 children but really feel we have one more coming to our home. I don't care how he gets here so we decided that instead of spending the money on harvesting eggs now, storing them for years, and then maybe getting those eggs to be a baby later...we would rather spend that money adopting. There are babies out there that need a home and I have already given birth (beautiful births and wonderful pregnancies) 3 times. And we can try after chemo and if it works good and if not we can adopt! No worries now!
Monday, July 7, 2008
I had a port placed on the 3rd of July and that went well! I am having some pain but my plethora of pain killers takes care of most of it! It looks really bad though: it is really bruised.
I was a little nervous for the port placement surgery. The only surgery I have ever had was my tumor resection - huge, lone, massive, and debilitating - so I did not have a fair picture to relate to!
The surgery was very easy. The anesthesia was not as deep (if that is how you say that). It put me to sleep but not like the last time where it took me 3 hours before I remembered how to breath on my own. I remember everything until the IV was given and I remember waking up. They say not to lift over 20 lbs for 3 weeks, but of course I could only go 2 days without lifting the baby so I hope I did not move or shift tubing.
The site is tender and looks a little alarming. The port is a bump a few inches below my collar bone and you can see/feel the tube that comes from it, up to the collar bone and then disappears. My husband is not very fond of it but he will have to get use to it because it will be there for a long while!!
They put a double port in. It has two circles on the front but they go to the same catheter and tube. The doctor said that way they can give and take at the same time, It is a little bigger than the ones in pictures I saw but even then it is only about 1 x 0.5 inches.
So New news is that chemo starts tomorrow! I am very excited! They say that if it works (shrinks the tumor) I will have less pain within a month! That is a hope that is worth all the side effects!
The plan is to do 2 rounds (3-4 weeks each) and then do an MRI. If there is any shrinking or softening we will continue. If not we will adjust dose and/or meds. We will continue with the chemo until the tumor is manageable (there is little to no hope of it ever being GONE) and then use other drugs, surgery and/or radiation to keep it that small.
We are going start with weekly IVs of a low dose (have to get exact dose tomorrow) or Navelbine and Methotrexate.
With the low dose they do not anticipate as many side effects. I will probably NOT lose my hair and have a much lower chance of liver and heart damage. I do have to wash hands, use a foam tooth brush, electric razor, watch my diet, take my temp 2 times a day, and use pads instead of tampons. Side effect we are anticipating are some nausea, low blood count, some fatigue and mouth sores. I think I can live with that list. I guess we will see.
Wish me luck!