Wednesday, January 30, 2013

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!



  1. Maggie, you are such an inspiration! Radiation sounds like a nightmare. I had no idea of the process. But how wonderful that you and your foot are on speaking terms again. That must be a relief.
    As always, you are in my thoughts, Janice St. Marie

  2. After reading your post, I wanted to comment and say, Maggie, you are such an inspiration. When I clicked on the link to comment, Janice's comment and exactly what I was going to say came up. So, Maggie, you see the impact your journey is having on so many of us. Though I have never met you, I think of you every day and of your bravery. My best to you. Keep at it. Barbara

  3. Your instruction has moved past that of pastel and now includes de-mystifying the processes of chemo and radiation therapies. Your writing is as wonderful as always. Thank you for sharing your journey and your thoughts - this allows us to walk with you and gives us all the chance to let you know we are supporting you along the way. Keep strong, you are an inspiration! xxLiz

  4. Things seem to be going quite well. I admire your strength and courage. God is with you. Take care.

  5. Hi Maggie, after reading your blog today I wanted to let you know how much you inspire me. You and my neice are going thru just about the same thing. She is much like you in the fact that she isn't letting this stop her. Paula is my niece and had brain surgery a few years ago and now having to go thru chemo. But like you she doesn't let it stop her, she still hikes , bikes and you name it she does it. With your determanation I know your beat this battle your in right now. I look forward to seeing the wonderful art that you'll make while going thru this journey in this one chapter in your life of many chapters. Stay strong and push on. You have touched so many people that you've met and even those you haven't met. Your in my thoughts and prayers.

  6. You are so brave, a true fighter and as others have said an inspiration.

  7. Isn't it amazing how something that seemed so minor before, like a shower or a smooth floor or a foot that talks to you, can be a big deal now? All in our perspective on life. Glad to read that your perspective is still hopeful and courageous and strong, very strong. You go, girl!

    Still remembering you in my prayers, and thanking God on your behalf for your wonderful family/caregivers. They really are heaven sent, aren't they?

    Mary Ann