Radiation

I don't feel entirely comfortable updating you at this point because I don't feel that I have done enough research to properly inform you of my choices. However, I know that some of you were waiting to hear about the outcome of our appointment yesterday, so here it is.

Dr. Yamada is recommending five high-intensity treatments to my clivus using IGRT (Image Guided Radiation Therapy) and one treatment using regular radiation to my pelvic bone. He is suggesting leaving the other skull met (the one near the crown of my head) alone for now since there is no impact on the brain at this time.

He is concentrating on treating the clivus because there are nerves very close to it that affect the face and eyes. His concern is that any damage that may be done by the growth of the tumor could be permanent, so he would prefer to try to destroy the tumor before I feel any effects. The potential side effects of the radiation treatment -- in addition to the usual issues of swelling at the site of the tumor, sensitive skin, fatigue, and hair loss in the radiated area -- over the long term are fractures of the clivus, cancer caused by the radiation, and damage to the pituitary gland which may result in hypothyroidism (controlled with medication). I thought I had included a link to an MRI image of where the clivus is located, but apparently I didn't so here it is: http://rad.usuhs.mil/rad/radbrowser2/index2.html With any luck, that will take you directly to the side image of a head and if you move your mouse around the image, you will see the different areas. If it takes you to the main page, you want Head & Neck, then MRI, then Sagittal view.

I asked him about using RFA (radio-frequency ablation) for the pelvic tumor rather than radiation, and his response was that if the radiation didn't work, RFA would still be an option. It is my understanding that RFA is a better option for bone mets, but I need to do some re-reading. I believe his thinking is that the less invasive option is the better one, while I think the option that has the fewer long-term potential side effects is the better one, regardless of the level of invasiveness (if that's a word). Anyway, this is one of the areas where I don't really feel knowledgeable enough to state what I think is best. There is more reading to be done.

I can't have any radiation within a week of having Doxil, because that chemotherapy does not react well with radiation. So, his nurse practioner will contact Dr. K's office to discuss a possible schedule for treatment. My guess is that I may go in the last week of October to have scans done and a face mask made (to hold my head completely still during treatment), and the week of treatments will be performed in mid-November after our vacation. Don't hold me to that, though. He said it's important to do the treatment, but it's not so urgent that it needs to be done next week. He said we should definitely plan to take our vacation and they will work out the scheduling details.

My Zometa treatments will begin on Friday and are supposed to be done every three weeks. That means I can get one more before we leave and will be due for another a week after we return. I don't think I need any bloodwork prior to this treatment, and the infusion is 30 minutes.

On a final note, 20 years ago today at 2:00 p.m., Ed and I exchanged our wedding vows and started off on "Ed and Karen's Excellent Adventure." It's been a trip full of beautiful vistas, mudslides, sunny skies, dirt roads, soft breezes, snowstorms, and calm seas, and somehow we have made it through the good and bad times mostly in one piece. Although there have been moments when we thought we wouldn't make it through another day (let alone another year), overall -- and after all -- we feel compelled to say that life is good. The past few years -- especially this year -- have been difficult due to my health, but we have risen to the occasion and try to fight this as a team. I know it hasn't been easy on Ed, but he keeps on doing and fighting and questioning and soothing and prodding, and I honestly don't know what I would have done or would do without him. So here's a toast to us!