Great News!

Posted by Maggie

Yesterday was a day of low and high. It was the last day of construction--the bathroom was done, but the hall and bedroom floors had the carpet removed since I could not walk on it, and new wood floor. I am so glad to have construction workers out of the house. Of course, in typical fashion, they did not finish on time, and I had to leave for radiation without a shower, which distressed me. One of the side effects of radiation, steroids and anti-seizure medication (and probably the chemo as well) is that I get distressed more easily, and it's hard to return to an even keel. So I went off to radiation in a funk.

Radiation is not exactly painful, though it gives me a headache and makes me tired, and burns my scalp. The worst is the mask which bolts my head to the table. It's a good thing it doesn't take a long time. There are tiny breathing holes but the thing is not what you might call comfortable! This is not a very flattering photo but it's reality--I've given up all thoughts of vanity now, though I do hate my swollen face which is a result of steroids and will apparently be months like this. And yes, I'm losing my hair. Oh well it will come back. Meanwhile I'm going a bit strawberry blonde, which is what I was when I was young.

Anyway, this is how they immobilize my head. The red lines show how the radiation goes. I get 8-12 zaps of varying length, most 6,000,000 volts or more. Five days a week for 8-10 weeks,  and chemo every day by pill at home. I'm grateful the chemo is not intravenous! I have terrible veins and it's always an issue to find anything usable.

So after I had radiation I had a doctor appt. This was the beginning of the good part of the day.  The doctor is scheduling me for physical therapy now, which should help me learn walking again. But he also said I could take off the CFP brace from my left leg, and that was a huge change. It made it much easier to control and direct my foot which is now speaking to me most of the time. So much difference that I have been able to get around better in the house. Of course, having the carpet gone at the same time also helped.

For the first time in over a month, yesterday I was able to sleep in my own bed, and had the best night's sleep so far. It's made an enormous difference in my morning! I am so happy to be more mobile and rested.

My wonderful daughter is here now, helping take care of me. For the last 4 weeks I've had sisters here, one after another, and they have been fantastic. I am hoping by the time my daughter leaves I will be much more functional, but I will hate for her to go. She is seriously spoiling me (of course Bill has done that forever!).

Today we're getting a painting stool for me to use in the kitchen and at the easel. Not sure if I'll actually get to paint today or not but it's getting closer. Still fighting the hand shaking but I'm going to paint soon! Will post results whether good or not.

As always thanks for all the emails, support, positive thoughts and prayers. You are all the best!

Maggie