1/6 of the way

I made it through the first week of treatment pretty easily.  A few bouts of nausea, but nothing serious.  I don't feel too tired yet, though everyone says its cumulative.

It's a strange place to be in because physically I feel really well.  I've been spending as much time outside as I can, trying to exercise and stay busy.  The radiation treatment is in the evening each night, this week at 6:05.  I'm not sure why they change times.  This part is incredibly difficult.  6pm is a difficult time for every family, let alone trying to get across town with two kids in tow.  Most days the kids have just been coming with us to radiation.  There are some toys there and a chess set and the treatments go really quickly. I'm still struggling to get the mask on but I can talk myself through it and just mentally pretend I'm somewhere else.  The techs let the kids come back one day to see the actual radiation machine and let them touch my mask so that eased their fears a little bit.

When I'm finished with a treatment my head feels hot, as if I was sitting next to an oven (which I guess I was) and last night in particular it felt as though there were flames bursting out of my head.  I just came home last night and went to bed with a bag of frozen blueberries on my head.  I'm having some minor headaches and some strange dizziness, but overall, 90% of the day I feel great.  Paul is running on empty, trying to work all day, race home to get me to treatment and then get home to get the kids homework done and get them to bed.  At about 10pm he sits down to figure out what the next day has in store.  Work has been incredibly flexible with him and allowed him a temporary parking spot to be able to get me to treatments.

I feel so lucky to have sailed through this beginning treatment, but every time I take a shower I fear that it will be the day when my hair will fall out.  The doctor said it would be between week 2 and 3, give or take.  He said it will come out in one giant chunk and then I will have a bald spot on my head that will likely not grow back or will grow back very slowly.  This is because the type of radiation I'm getting is extremely high dose and it kills all of the cells it comes in contact with.  The hair follicles will likely be dead in the area of treatment. I've got some cute hats lined up, but I still am dreading the moment when I'm holding that clump of hair in my head.  5% of people don't lose any hair, so I suppose I could hope to be in that number, but I'm not holding my breath!!!!

We've had a lot of insurance issues this week so I'm spending a lot of time on that.  We have to use special pharmacies now and we have to fight for some of the treatments to be covered.  It's very confusing and overwhelming, but we'll figure it all out eventually.  It is very time consuming and emotionally consuming.

Next week I'll meet with my neuro oncologist again to do a mid-treatment exam and to look over my blood work to see if my white blood cells are holding up okay.  I'm hoping at this treatment they will discuss the pathology discrepancy again and we'll know more about how long I'll be on the chemo pills.

The social worker at the radiation center gave me some books for the kids that have markers and coloring pages titled "My mom has cancer" and so we finally sat down with the kids and talked to them about the differences between the brain tumor and brain cancer (semantics really), but Noah has particularly been afraid of the word cancer and so I felt that we needed to put it out there before it comes out somewhere else and he is on the defensive.  He was pretty upset but we talked him through it and he seemed okay after we were all done.  Maeve is still doing fine and doesn't seem to be worried at all, which I am really grateful for.

So, at this point I am doing much better physically than I thought I would be and I thank God for that.   I'm hoping to figure out some way to balance the needs of the kids and the house and of my thoughts. I don't want to be idle because then my thoughts wander, but if I'm too busy than I feel like I don't have time to process.

Thank you for your love and support, as always.....

Off to treatment!