Monday, October 12, 2009

No "Home on the Range" here

Today we heard a discouraging word and the skies were cloudy all day. Hence today's title.

Today was my appointment with the Radiation Oncologist to talk about the possibility of radiation to the tumors in my thoracic spine. The purpose of the radiation would be to shrink the tumors and give me relief from the chronic pain. The doc that administered my last dose of radiation (to my legs after the surgery) is out on leave so we met with a new doc today. I never like changing in midstream but he did a good job of understanding my case and thoroughly explaining everything.

What we learned is that he is "pretty sure" that he will not be able to safely radiate that area. I actually had radiation twice in the same area when I was being treated at Waukesha Memorial; the first time when they did my lung to stop the blood I was coughing up and the second time when they did my spine and ribs to relieve pain. What do my lungs have to do with it? When you shoot radiation through the body it goes through the whole body, doesn't just stop at the area you want it to so that means it went through my lung to my spine. The risk now would be administering too much radiation to my spinal cord which could cause paralysis. Paralysis would definitely be bad! There is still a small possibility that we could go ahead because the doctor did not have the actual films of the radiation I had before, only the printed reports. He is going to order and examine the films from Waukesha but he was highly doubtful it would make a difference in his opinion. I will know for sure later this week.

So where do we go if we get a definitive NO? There would be a couple more things to look at. First is something called radiopharmaceuticals, radioactive chemicals that they inject directly into your bloodstream. From the bloodstram they are attracted to bone. I don't know much about them yet but I understand they are not always successful and, like everything else, there are associated risks. I have to learn more about them and see what the docs recommend. Surgery is still another possibility - I have an appointment at the end of this month with the surgeon who did my back in May. We'll see what he has to say about the chances of success. The last choice is to do nothing - just keep managing the pain and live with it.

Speaking of pain - we made a change in the way mine is managed. I am now back on pain patches - they are a transdermal system that you stick on and change every 3 days. I have been on them before and they seem to work well for me. I think they give a more consistent delivery of medicine than the long-acting pills I was taking. This has allowed me to reduce the amount of short-term pills I take during the day which is a welcome thing.

Big weekend coming up! It is the ThyCa: Thyroid Cancer Survivors Association national conference. This year's event is in Boston. Jessica and I are leaving Thursday afternoon and will come home next Tuesday. We are staying a couple extra days to visit friends and tour the city, as neither one of us has ever been to Boston. ThyCa is the association I did the fund raising for at my birthday party in April. We are hoping to learn something new about the trial drugs out there, but the biggest benefit is in meeting more people who are in situations like mine and learning from the most prominent specialists in the country. The speaker's list is a literal Who's Who of endocrinologists, oncologists, surgeons, even dentists who specialize in dealing with Thyroid Cancer and it's effects on the body. You may remember we went to the conference in St Louis last year. That is where I learned of the doctors at Froedtert who I am working with now. I also met a few patients who I still stay in touch with. One friend in Texas is now taking Nexavar, the same drug I am on. He is coming to Boston also, it will be good to see him and compare stories.

Because of our travel I am not sure when I will be back to you again. I will definitely give you an update when we get home but I am not sure how much time I will have to post over the weekend. I will keep you up to date as best I can.

Be Well - Be Blessed!

1 comment:

  1. Thank you for all your posts to your blog. Sorry to hear that things are so difficult for you. I'm glad to hear that you'll be at the Thyroid Cancer Survivors' Conference this weekend. I wish you all the best.
    -Cherry Wunderlich, a volunteer for ThyCa