Chicago Bound

Just wanted to update everyone with some more information. I am returning to Chicago for more testing this week. Dr. Vokes and his team want me to have another PET Scan and want it to be adminsitered at their hospital. My last PET Scan was at the beginning of December -- in the world of cancer 6 weeks is a long time. If there are no new metastases, it will be a good sign that the new mass in the base of my skull may still be just scar tissue. Dr. Vokes is worried simply because I experienced a change in symptoms and a digression in my facial nerve functioning about the same time that we discovered this new growth in the PET Scan that Dr. Wheeler ordered.

I am scheduled for the PET Scan at 10:00 (11:00 Indiana time) a.m., so please keep me in your prayers then. I also have consultations scheduled with Drs. Redleaf and Stinson (the surgical oncologists who work with Dr. Vokes) at 3:00 and 3:30 respectively. Dr. Vokes feels that, unless we can conclusively determine that this mass is scar tissue, they will recommend an aggressive course of treatment including radical surgery (to remove as much of the cancer as possible) and radiation coupled with chemotherapy. Although research shows that adenoid cystic does not respond well to chemotherapy, there is research that shows that chemotheraphy coupled with radiation increases the effectiveness of the radiation.

The good news is that this team comes highly recommended. The bad news is that I've already overwhelmed all my readers with the names of various doctors... if we end up working with UCH, we will be adding 8 news doctors to the mix (each doctor works with a partner and I would be involved with 4 separate teams).

I think one big area where I need prayer is in making a decision. I'm getting conflicting advice from each doctor. Ultimately, the one I trust the most is doctor Wheeler; however, he has deferred to Dr. Vokes and wants Dr. Vokes to make the recommendation about the next step. I have a second appointment with Dr. Vokes on Friday. At this point the team will have the results of Tuesday's PET Scan and will have conferenced together about my case. On Friday I will be given their recommendation for a course of treatment. Lori Cloud is going with me to this appointment, so pray for both of us that we would have the wisdom to ask the right questions. And especially for Lori because she has to relive so much of what they went through with Ali as she supports me.

There is another surgeon who was recommended to me by the Porsche family. I have been playing phone tag with his nurse trying to set up a surgical consultation. Everyone thinks that I should put that on the back burner for now and focus on what UCH recommends, but I still feel like my gut instincts have been good so far and I'd like to meet this surgeon before I hear Dr. Vokes recommendation as I am not sure he will even consider taking my case if I elect to go with a surgeon outside the UCH team. I would like to be able to propose that question at Friday's conference. I have an appointment scheduled with him on Feb. 5, but I called to try to reschedule it for sometime this week and was waiting to hear back from the nurse before everyone told me to hold off on Leonetti. I asked for an appointment late on Tuesday or early on Wednesday. If that could be worked out, I would have the opportunity to get a gut feeling for Leonetti prior to hearing the UCH team's recommendation.

I am still without internet access and can only update from someone else's computer. Unless we receive some new information on Tuesday, I probably will not update again until after our appointment on Friday or I will ask Alysia to log on and update everyone after Tuesday's appointment.

Thanks again for your prayers and support!
Ashli