scary as hell.

This is a quote from Mike as we were leaving the Siteman Cancer Center today. Sorry for the language, but today was rough. Like I said we started with a visit to Dr. Haughey where he shared the surgery specifics and pathology: 2 of 6 nodes were affected and lymphovascular invasion was identified. The invasion of the cancer outside of the contained walls of the lymph nodes gives us the marching orders for some radiation.

The operative word there in my opinion is some. Because we have had the surgical procedure to remove the bulk of the cancer mass, it limits (or should limit) the amount of radiation that Mike will need to mop up this remaining bit of cancer. Dr. Haughey said he wants us to pursue radiation at this point but believes it is only necessary on the left neck at an adjuvant dosage with no radiation to the primary site or right neck.

So it was on to the Radiation Department. Here is where scary and overwhelming came into play, starting with the people sitting in the waiting room. We will spare you details. (Our apologies to Tom Vespa who got more details than he was hoping for when we tumbled in from the hospital today.) We are too tired to say too much but basically we got an introduction course in Radiation 101 and we understand in spades why this is what we have tried to avoid. It confirmed why we pursued a surgical treatment path. It confirmed why we are thankful that Dr. Haughey's research thinks outside of the cancer-community-box. It confirmed why we will continue to approach radiation treatment with caution. It confirmed why we need to continue in prayer for healing and guidance.

It started (like it always does) with an intern coming in to talk with us first. He explained what a "standard procedure" would look like: Six and a half weeks of radiation treatment 5 days a week at the back of the mouth and on both sides of the neck, followed by chemotherapy. Then he showed us a power point presentation on what to expect from a radiation treatment, how they make the "masks" to hold you still during the treatment (very scary), and many slides & photos on side effects. (I will save specifics for another time.)

Then Dr. Thorstad came in. He works closely with Dr. Haughey and we were interested to hear that they converse several times per week. Dr. Thorstad said "I think you would benefit from radiation treatment" and explained what specific treatment plan he would recommend which lined up with what Dr. H said. In a nutshell: 60 GREY TO LEFT SIDE NECK. NONE TO PRIMARY SITE. NONE TO OTHER SIDE OF NECK. He would treat the exact regions where the affected lymph nodes were located and then use a lower dosage about 1-1 1/2 centimeters above and below.

FYI: A "full" dose is 70 GREY. An adjuvant or "helper" dose is 60 GREY. The "lower" dose for the surrounding area is 52 GREY. It was interesting to hear that Dr. Thorstad used to use 66 GREY for adjuvant, but his research of the past 1 1/2 years shows that 60 GREY is just as effective.

Both Dr. Haughey and Dr. Thorstad explained that chemotherapy in the case of Mike's kind of P16 positive cancer does not increase the effectiveness of the radiation for the toxicity risk to the body. We learned that the horrible slides we saw were side effects of radiation on both sides of the neck so we were a bit relieved about that. We also learned that some people are more tolerant of radiation than others on a molecular level, and they really do know not why.

Our next step is to see if we can have our radiation treatments in Omaha at UNMC. More specifically, we need to see if UNMC would agree to respect and carry out this particular treatment plan. We are going to give Dr. Thorstad and his staff a few days to write up Mike's case and treatment, and will call Dr. Lydiatt at UNMC on Monday.

For the next few days we are taking a vacation from cancer. Mike is going to enjoy going to work and continuing his insulation job at the new house. I am headed to Minneapolis for Creative Memories national convention aka SHOWCASE. We both need a cancer break. Sorry this is long. If nobody ever read a word of this blog, I do believe I would have to do it for ourselves for our sanity. Even though we are exhausted after today it was meaningful to try to make sense of a hard day and four pages of messy notes. Somehow it clears my head to blog about it. And it is tremendously comforting to know that loving friends are caring... and prayers are going up.